Campaign for the Mentally Handicapped's "participation weekend"
at Castle Priory College. This was reported by Alan Tyne, Paul Williams and
in Working out: an account of CMH's participation weekend at Castle
Priory College in June, 1975, with some comments published London by
CMH, 96 Portland Place, W1N 4EX in 1975.
31.10.1975 and 1.11.1975
conference at Church House, Westminster in
connection with the publication of volume one of Larry Gostin's
A Human Condition. The Mental Health Act from 1959 to 1975.
Observations, analysis and proposals for reform.
Heavy Daze number 6: "Mental Patients Union - A federation of Mental
Patients group[s] around the country, based on the ideas that mental
organise and support each other and fight for the rights of each other. The
National Info. Centre has recently moved out of London (a good sign?) to
Hull MPU, 16 Clifton Gardens, St Georges Road, Hull, HU3 3QB. Write to them
for their list of contacts across the country. East London MPU, 37 Mayola
Road, E5 (page 31). The same issue includes (page 28) "Society, Psychiatry
and the MPU - Personal responsibility? My View", by "Mike Smith, Hull MPU"
and a notice about the Directory of the Side Effects of Psychiatric
Union of the Physically Impaired
Against Segregation and
the Disability Alliance discussion of the "Fundamental Principles of
Mind Out "Voluntary
patient - involuntary
treatment" (A personal account by Andrew Roberts)
20.12.1975 Angela Sweeney born. See
Recovery In Sight Centre 2009 -
This is Survivor Research 2009
Peter Thompson founded The Matthew Trust
1.1.1976 Which? Books Understanding Mental Health
11.1.1976 About half the patients at Paddington Day Hospital signed
a letter of complaint, leading to an inquiry and (eventually, in 1979) the
closure of the unit.
13.2.1976 The telephone number used by the Mental Patients Union
moved with Andrew and Valerie (Argent) Roberts to a house they later shared
29.3.1976/30.3.1976? Janet Cresswell stayed overnight with
at 37 Mayola Road. The following day, Janet stabbed Desmond McNeil,
her former doctor, in the buttocks. Joan wrote (about 1993):
"This news devastated me, but I had no time to dwell on it as I
had to continue to occupy Mayola Road until a house had been obtained for
Matthew O'Hara and others. I had to stay until the official eviction took
place. In the meantime Matthew O'Hara, an amateur expert in legal matters,
tried to help Janet, but she refused his offer of help. To this day Janet
has remained a patient in Broadmoor Hospital."
Janet Cresswell was released in 2006. See
30.1.1976 150 squatters evicted by 100s of police from Hornsey Rise,
GLC Estate, Hazelville Road: (Welby House, Goldie House, Ritchie House).
Cherry Allfree was,
at one time, a squatter in Welby House.
Joan Hughes' diary entry that Mayola Road closed:
"All the troubles with Mayola Road appear to be over. The
place is empty now and bath and toilet have been smashed up by demolition
men, awaiting the destruction of the entire building."
Wednesday 28.4.1976 - 7.30pm Question put to the leader of Hackney
Council by Councillor Lois Jacques "Will the Leader please state what
policy decision has been taken regarding the request from the Mental
Patients' Union for property to be provided by the Council for their use?"
- Minutes in Joan
Spring 1976 "Spring is Rising" by
Frank Bangay. This was published in Springfield Words, a
magazine produced by
Springfield Hospital in 1978. Frank's 1985 poem "Food and
Shelter" (Naked Songs and
Rhythms of Hope pages 104-106) relates to experiences in
1976 to 1978 and "the revolving door system that we can get caught up in
once we enter the psychiatric system".
PROMPT: Protection of the Rights of Mental Patients
in Therapy - Became
CAPO (Campaign Against Psychiatric
Peter Barham's thesis,
about schizophrenia, thinking about schizophrenic thinking and
schizophrenic thinking was awarded a Ph.D. by the University
of Durham in 1977. It drew on his
Winterton interviews and led to
human value in 1984.
1977 National "Women and Mental Health Conference", London. "as far
back as the late 1970s, whilst working as a trainee social worker, I helped
to plan the first and only National Women and Mental Health Conference, in
the hope that crisis provision and better support services could begin to
be set up for women who feature more heavily in the psychiatric system"
(Helen Shoenberg, 12.4.1994 Conference speech) -
chronology. The conference was disrupted by
conflicts between radical and other feminists. Helen Shoenberg was the
only patient participating.
Mary Nettle married in 1977. "Six months
later [in 1978] I had a 'nervous breakdown', I was under pressure at work
and one day had 'hysterics' in the office. I ended up in
St Bernard's, a
horrible Victorian asylum for three months. I had become a user of the
mental health system and been given the label of manic depression. This
had, as you can imagine, a profound effect on my life and of those close to
"There was no discussion about medication or someone's problems. Treatment
was totally drug oriented".
Ken Lumb and
Anne Plumb married in 1977. Anne describes 1970 to 1985 as "Ken
Lumb's early years of activism" marked by long drawn out campaigns that
did not achieve the main objectives, or only on a small scale, but which
"engendered a solidarity and an agenda that did not go away". These
included campaigns against the withdrawl of the invalid tricycle, ill
thought out pedestriastion schemes, buiding of Young Disabled Units,
action for adapted housing and integrated care support, accessible
environments and public transport "and so on".
A Human Condition. The Law Relating to Mentally Abnormal Offenders:
Observations, analysis and proposals for reform, the second volume of
A Human Condition, published by
Mind Out "World
leader meets his match
- John Hooper says that sometimes, the compulsory powers of the Mental
Health Act can be a blessing in disguise" (A patient's personal account)
"Here we go then. It's Jubilee Bank Holiday Monday, 6.6.1977, and
you're down for 2/52 fortnightly".
Get Well Soon 2 akathisia depicts
Hellingly asylum on that day.
October 1977 Joan Hughes re-isued A Directory of the Side Effects
of Psychiatric Drugs. Duplicated at Centerprise.
Autumn 1977/Spring 1978 Hackney Worker's Educational Association
course on "Mental Health and the Community" at Centerprise, in Dalston. It
grew out of discussions at Centerprise about how to cope with customers
with mental health problems. For the ex-Hackney MPU members who ran it, it
grew out of a desire to create a dialogue between people of divergent
views. The principle was that people could talk without agreeing and
without compromising the purity of their respective principles.
Psychiatrists, for example, could debate with anti-psychiatrists, and
mental patients talk to mental health workers, on equal terms.
Between the autumn of 1977 and the autumn of 1984, Hackney Workers
Educational Association was involved in meetings on alternatives to prisons
) - the
local psychiatric unit - mental handicap (and the formation of
alternatives in mental health
mental distress in old age
and a series of meetings with
speakers who had physical or communication disabilities (Everybody's
Hackney). Ex Mental Patients Union members were active in all of these.
6.12.1977 Meeting arranged for this date when Manchester
Mental Patients Union would show a Panorama programme about mental illness
1978 On Our Own.
Patient-Controlled Alternatives to the Mental Health System
by Judi Chamberlin
(born New York 1944 - see American index). Judi visited London,
Holland and Iceland
1982 - See
July 1985 -
Barker and Peck
1987 - Her book inspired
Mary O'Hagan in New Zealand -
Brackx prepares to publish a
Elsinore 1994 -
National Empowerment Center (1997?) -
Coercice Treatment Conference 2007
Start of the Anne Plumb archive
Anne Plumb to
Andrew Roberts 30.7.2007:
"I was most interested to learn of your involvement with the MPU. Did
you know any of the people involved in the Manchester MPU? I came across
their phone number at the Grassroots Bookshop in Manchester in the
1970s - along with such publications as State and Mind (I have a copy which
reviewed Judi's Chamberlin's On Our Own when it came out in the US).
Unfortunately, by the time I got the confidence to contact them the groups
1978 Brian Davey (Nottingham) first experienced psychosis or non-
ordinary state of mind. See
Nottingham Advocacy Group -
Asylum April 1989
Asylum Spring 1991
Asylum Autumn 1991 -
Asylum Winter 1991/1992 -
1993 - Ecoworks
1978 Joyce Leeson and Judith Gray Women and Medicine
Tavistock women's series. London : Tavistock Publications,
Spring? 1978 National Women's Liberation Movement Conference
Birmingham. The last UK National WLM Conference. "Despite economic
resources, no group offers to organise a conference the following year.
Following this, all conferences are regional, identity based, and/or
October 1978 North West Mind established with the appointment
as North West Campaigns Officer with offices in Blackburn
Liverpool. [Later combined at Preston]. Mind
already had regional bases in Cardiff, Leeds, Gateshead and Sheffield.
Mentions sixteen "active local associations for mental health in the area".
David to mobilise concerns of "mental health volunteers and professional
workers". (Mind Information Bulletin No.36. October 1978)
Manchester Mind -
North West Schizophrenia Fellowship -
October 1981 -
early 1980s? -
The North West Mind regional council brought together individuals
from local associations across the region. About 1986, Irene Harris and
Andrew Hughes, "two of the more active recipients of mental
health services" became chairperson and vice-chairperson. (email Andrew
Hughes 17.4.2010) - 1988;
North West Mind Consumer Network
1979 Nigel Rose graduated from St. Catharine's College, Cambridge,
in Social and Political Science. [OR "After finishing in 1982 he moved to
Manchester, and started working as a researcher for
Judith Gray, initially
in a voluntary capacity and then on a Manpower Services
grant. He was heavily involved in the
Getting to Know You Project, and also
developed links with the local community in preparation for the opening of
Powell Street CMHC."
North Manchester" Hospital " in  and spent several years
working with MIND in Manchester and a number of
other mental health projects. Connected to
Mind in Manchester
January 1985 to January 1999, as a development worker
[1985-1988], chair, and
1988 Hearing Voices
and 1992 Dutch
experience - Hearing Voices Newsletter editor:
1994 - Ceased May
1994 - At Mind he developed the
Schizophrenia Media Agency from December 1994 and
Inroads into employment.
January 1989 to January 2000 he worked for Manchester
City Council, first as of the Manager Mental Health Team ... [From "
1988, employed by Social Services
to manage their community support workers on
Harpurhey Resettlement Team. In
he moved to the East Manchester
CMHT, where he stayed until it was disbanded in 1998."] then as Asylum
Team Assessment officer. From May 2000 to November 2009 he was Area Manager
for Refugee Action in Manchester.
[Interview 4 See also
note under Interview 5]
About here that
Manchester Mental Patients Union published Your Rights
in Mental Hospital - A Mental Patients' Union (MPU) Pamphlet.
The contacts list includes "Crisis Centre" 437-4594" - "Anorexic Aid: Mrs
P. Hartley, 1 Pool End Cl. Macclesfield, SK10 2LD"-
"MIND 226-2623" -
"Phobic Society 881-1937" - "
PNP (people not psychiatry) 226-8089" "MPU
Address: We are trying to set up a houses, but until then contact c/o Grass
Roots Bookshop, 109 Oxford Rd., Manchester MI. Telephone 236-3112"
Frank Bangay wrote the lyrics "Pretty Girl" to a song performed
by the Fighting Pigeons
Half The Sky: An Introduction to Women's Studies
edited by the
Bristol Women's Studies Group. London: Virago, 1979. Chapter on "Bodies and
Minds" has excerpts on "Women and Mental Health" with a review (pages 95-
96) of Phyllis Chesler's
Women and Madness
(1972) and excerpts from Anne
Karpf (1978) on 'depression' and Cathy Haw and Rosie Parker (1977) on
feminist psychotherapy from Spare Rib
3.5.1979 Conservatives won the General Election in the
United Kingdom - Market choice and consumerism became positive themes and
state welfare was suspicious - The Conservative manifesto said
"We must do more to help people to help themselves, and
families to look after their own. We must also encourage the voluntary
movement and self-help groups working in partnership with the statutory
From May 1979, the mental patients' movement in the United Kingdom
developed in a radically different political climate. This was not only due
to the change of government, but also to new attitudes to mental patients
amongst local authorities, voluntary groups and others attempting to defend
alternative political views or threatened services. The patient as
consumer who should be listened to took a decade to enter government policy
(Griffiths Report 1989). In the meantime, our language had
changed. We were no longer
mental patients uniting, but
engaged in a
speaking out -
user involvement. Half way through the decade, mental health
users began to think
People First, the movement of people with a learning difficulty,
developed a strong autonomous existence in the United Kingdom (see
and the survivors' movement, unlike
mental patients union (see
MPU Declaration and
Mind Out 2),
developed separately. Attention to
mental distress in old age involved an alliance of patients,
carers and professionals.
November 1979 - 42nd Street founded
Manchester. A community mental health project
young people aged between 15-25 years, living in Manchester. [An old
website said it was founded in 1980]. Alistair Cox established 42nd Street
and directed it for over 20 years.
In 1983, 42nd Street published
Self portraits of distress: "eleven people describe their experiences
of stress and their search for understanding and support - 42nd Street, a
Youth Development Trust project", Manchester: Youth Development Trust.
96 pages. By 1986 it was funded
by the Urban Aid Programme. Published Principles into Practice. A
developmental study of a community health service. (Aileen McDermott
1986). Tried, with limited
success, to make its management structure accessible to young people in the
belief that consumers of a service, should, if they wish to, participate in
the decision making process.
2.3.1990 "42nd Street - Community based resource for young people
under stress" (Company 02476342) incorporated.
Helen Spandler was based there as a research worker from August
1994 to August 1995. The report on her research
Who's Hurting Who? Young people, self-harm and suicide
was published in
1996. 2000: Bernard Davies StreetCred?: Values and
of mental health work with young people. Leicester: Youth Work Press.
Published in association with 42nd Street. 2006 In and Out of Harm's
Way by "Alex". Manchester: 42nd Street. 15 pages.
says: provides support service to
young people experiencing stress and mental health problems.
Lawletter Quarterly magazine published by John Bagge,
then at 90 Fawcett Estate, Clapton Common, London E5 9AX, from 1979
1983 (17 issues).
February 1980 The
National Schizophrenia Fellowship appointed a group development
officer (David Lynes?) for the North West based in Warrington
The North West Schizophrenia Fellowship split from the
National Schizophrenia Fellowship (NSF) in 1982, although the
NSF also continued to operate in some parts of North West England too.
I seem to recall that David Lynes was the 'boss' at North West Fellowship
and was a very energetic figure. I think there was considerable competition
between the Fellowship, based in Warrington, and
North West Mind,
based in Preston. I went to a meeting of the Oldham group of the NSF. It
was difficult to sit through, as it was a carer support group. People
present spent the evening comparing notes on the difficulties caused them
by their relatives with a diagnosis of schizophrenia. I do not think they
considered that the new member might have a diagnosis of his own. Ouch!
Eventually Mind and the Fellowship did find a way to collaborate and then
formed a quite considerable alliance." (email
Andrew Hughes 1.8.2009)
Matthew O'Hara found dead in an "MPU" house - house closed. This
was really the end of the Hackney Mental Patients Union housing. Surviving
members of Hackney MPU negotiated re-housing for the remaining tenants. The
Matthew O'Hara Committee: for Civil Liberties and
Community Care was founded in August 1981. Much of its
educational work was carried on through the
Hackney Workers Educational Association, continuing activities
that Matthew had been involved in.
PROMPT Conference on Anti-Psychiatry at Conway Hall
December 1980 End of Newham Alternatives to Prison (August 1974-
Decenber 1980) when Home Office funds were withdrawn. Second Chance and
Breakout: The Paper for Insiders (magazine) were established in its
(of East London Women Against Prison) and
Alan Leader ("ex-prisoner") were
members of the unpaid working collective.
International Year for Disabled People
1981 British Council of Disabled People established.
23.3.1981 Official launch of CHAMH (City and Hackney Association for
Mental Health) - Later City and Hackney Mind. The association had
formed in 1980 with administrative help from the Community Psychiatric
Research Unit and under the chairmanship of Dennis Timms, chair of
City and Hackney Community Health Council. User involvement was
slow to be established. "Dr David Kessel" (a mental patient) was elected to
the executive on 12.7.1982. Meetings were open to members, and Valerie
Argent, Joan Hughes and Andrew Roberts were amongst those who attended.
11.4.1981 Third meeting of "State Brutality Group" changes its name
to Inquest (United Campaigns for Justice) The members of the group
at this time were groups respecting Blair Peach, Mathew O'Hara, Jimmy Kelly
and Richard Campbell. -
[External link to Inquest website]
29.4.1981 Start of "Mental Hospitals - Prisons - and Community
Alternatives - A Hackney WEA and Matthew O'Hara Committee Class" at
Centerprise. Case study one: The Death of Richard 'Cartoon' Campbell
20.5.1981 "The Social Worker's Dilemma"
28.5.1981 "Community Aternatives to Mental Hospitals"
17.6.1981 "Community Aternatives to Prisons"
Madness Network News
Vol.6 No.2 Winter 1981 Page one:
The European Movement from an ex-inmate perspective
, by Swan, an
American activist travelling in Europe.
Madness Network News
Vol.6 No.3 Summer 1981 Starting page 12: European Convention on Human
Rights and An Evening with Frits Winterwerp, by Swan.
Madness Network News Vol.6 No.4 Winter 1981-1982
Page 8: NAPA Pickets Shock Shop, Berkeley, California, by Anne Boldt
and Disabled Hold Law Conference, Toronto, Canada, by
Starting page 10: The European Movement, by Swan
Matthew O'Hara Committee and
Hackney Mental Patients' Association
Page 16: "Democratic" Psychiatry in Italy by Swan
about June 1981:
The Advocacy Alliance set up.
July 1981 Riots. Atmosphere of fear and tension in Hackney.
Matthew O'Hara Committee News
Voices of Experience. Consumer
Perspectives of Psychiatric Treatment. North West Mind, Miller
Miller Arcade, Preston, Lancashire. 36 page pamphlet. Thurstine Basset's
25.10.1981 to 31.10.1981 Scottish Mental Health Week.
LINK announced the opening and successful development in Glasgow
of the Mental
Health Resource Centre,
LINK social clubs and the new LINK Social and
Activity Centre (to open in December)
October 1981 Sylvia Jeffares died in a road accident. Sylvia had
corresponded with and visited and Janet Cresswell throughout 1981 and wanted to
campaign in some way around her situation.
Joan Hughes inserted the following notice in the Morning
Star for 1.12.1981:
"JEFFARES, Sylvia. Died suddenly in October 1981, aged 32.
Courageous fighter for women's liberation and for human rights for all
prisoners. Remembered as dear friend and comrade - Joan."
Saturday 7.11.1981. Inaugoration of Hackney Mental Patient's
Association in the basement of Centerprise.
Dave Kessel in the chair.
Everybody sat in a large circle and said what they thought - in turn. See
below 9.4.1982 -
July 1982. See also
Hackney Union of Mental Patients, which was, in some ways, a
Hackney Mental Health Action Group (which
included a radical social worker).
November 1981 Tony Smythe resigned as Director of Mind.
Knight, editor of
Mind Out, left to
prepare programmes for
Channel 4 in January 1982. Mind Out closed down in
February 1982. Chris
Heginbotham became National Director of Mind sometime in 1982, and
until 1988. During that time he "was an active member of the
World Federation for Mental Health" and
secured its congress for Brighton in 1985.
Barbara Poole was conference administrator from 1983.
Larry Gostin (Legal
Director) remained until 1983, when he left to run the National Council for
Civil Liberties. - Apart from the
May 1981 consumer issue, it is difficult to find any indication
of patients voices in Mind Out at this period. The periods that
Mind publications gave mental patients a platform are the
mid 1970s (under
Denise Winn) and
1982 saw the publication of the first major UK history of the mental
patients' movement, by
, and of Dale Peterson's collection of
historic accounts of madness by those who experienced it from the inside.
The movement also gained a new name as the USA concept of "self-advocacy"
and the older concept of "citizen advocacy" were popularised in the United
Kingdom by CMH The Campaign for Mentally Handicapped People. Judi
Chamberlin visited patient activists in Hackney and elsewhere and
The British Network of Alternatives to Psychiatry was conceived in
Brussels. Patients prepared criticism of the parts of new Mental Health
Bill that seemed to undermine voluntary treatment and Mind's
crisis saw the closure of
and the end of MIND
Information Bulletin in the form we knew it.
Psychopolitics (1982) has two parts: Part One is a
critical review of anti-psychiatry. Part Two, "Psychiatry and Liberation"
is a thoughtful review of "Mental Health Movements and Issues: A Survey and
Prospect" including a positive review of "movements among the mentally ill"
in the United States, Germany, France, Holland, Belgium, Scotland and
England. Sedgwick comments that "The continental patient-groups have found
particular inspirations in the work of the Mental Patients' Union in
Commonplace established by
Manchester Mind. See
1982 Missing Link collective formed by women housing workers
in Bristol to provide woman-only "intermediate second stage accommodation
for single homeless women of all ages". Awarded Urban Aid for five years in
April 1983 and appointed four full time workers in June 1983. By 1986 it
had five communal houses in different parts of Bristol. "Most of the women
we house come from a background of institutional care, Some have left home
or a broken relationship; others are going through a crisis in their
(Finding Our Own Solutions 1986 pages 15-16).
Hackney Action on Mental Handicap (HAMHP) formed. It included
articulate local people with a mental handicap and organised its meetings
so that they participated in discussions.
About 1982? "Society for the Advancement of Research into Anorexia,
(SARA)" founded by Clare Ockwell and her mother. Clare had herself been
anorexic and used mental health services on and off since the age of nine.
She ran the society for ten years before seeing through its merger with the
Eating Disorders Association in
1992. Clare helped to found
CAPITAL in 1997. On
1.9.2007 she came fourth, with 28 points, in the last edition of
MasterMind. Her specialist subjects were anorexia nervosa, the Duncton
novels and the rock group Genesis.
14.1.1982 The New English Mental Health Bill A
A report of a PROMPT meeting
February 1982 Final issue of
Mind Out. Mind stopped it on
financial grounds, after " run of
nine years and 58 magazines". It was replaced by
OpenMind in the spring of 1983.
March 1982: Hackney Workers Educational Association "Alternatives in
Mental Health" meeting in a series
"Alternatives" meetings organised by Sheila Rowbotham. Doug
Andrew and Valerie Roberts led this one. After the meeting someone spoke
about the idea of a course on psycho-geriatrics - This led to the Mental
Distress in Old Age course.
Tuesday 9.4.1982 Brent Community Health Council Public Meeting on
"Under Pressure - racism - no money - loneliness - inadequate
housing and transport - unemployment - fuel bill - too few nursery places -
stress - If you can't cope with the pressures in your life should you be
labelled mentally ill?"".
Andrew Roberts prepared a talk on
Approaches to Mental Distress and Insanity"
which concluded with "some of
the things that groups have done to help themselves" - Including relatives
(National Schizophrenia Fellowship mentioned), the Mental
Hackney Mental Patients Association, "a self-help group that
regular weekly social in a local day hospital and is campaigning for a
patients controlled social centre" and classes run through the Workers
May 1982 A meeting in Brussels of the The International Network Of
Alternatives To Psychiatry
(Resseau Alternatif A La Psychiatrie) which led to the
formation of the
The British Network of Alternatives to Psychiatry
(external link -
archive). The British Network was
Stephen Ticktin. - See
Mind November 1985
Valerie Argent (Roberts) elected to the City and Hackney
Community Health Council on the nomination of
Hackney Mental Patients Association -
Hackney Workers Educational Association
visited London (staying with
MPU members), before travelling to Holland to
meet Dutch activists. She was following in the footsteps of her friend Ann
Boldt (Swan), who had frequently reported on the United Kingdom and
European movement in
Madness Network News. Judi then went on to
Iceland. She returned to the United Kingdom in 1985 as a speaker at the
World Congress of Mental Health
Summer 1982 Mixed
Emotions: A Collection of Angry and Peaceful Poetry
Frank Bangay's Seeing and Knowing, a poem that was
pubished in What They
Teach in Song
Saturday 11.9.1982 The Annual General Meeting of
CMH The Campaign for Mentally Handicapped People, in London, was
devoted almost entirely to "Discussion of Self-Advocacy and the role for
CMH in this movement" (Invitation letter from Morag Plank July 1982).
We Can Speak for Ourselves. Self-Advocacy by Mentally
People, by Paul Williams and Bonnie Shoultz, published in
The USA earlier in the year, was available at this meeting. [See
Frank Bangay's Solidarity Poster. This was sold as A4
photocopied sheets. It has been sold and given a way in various formats
since. The last stanza is
"We cried together last night, but our tears were in
solidarity with the sadness in the world,
and through our solidarity through our tears we
Another image and words leaflet self-published at this time was "Woman on a
Park Bench with Birds"
Tuesday 2.11.1982 Launch of Channel 4 (UK Television) to cater for
minority interests not met by the mainstream channels.
A demonstration video,
Oppression, was produced to make the case to Channel 4 for a
programme. This led, eventually, to
We're Not Mad We're
November 1982 Eighth World Congress of the International League
of Societies for Persons with Mental Handicap, held in Nairobi, was the
first to fully involve people with mental handicaps. Thirty participants
with mental handicaps came from Canada, England, France, Gaza, Germany,
Kenya, Norway, Sweden and the USA. They spoke seven languages. They held
their own discussions on the way they wanted to live, but made a
presentation to the plenary session and made recommendations to the closing
session. (CMH Newsletter 3, Spring 1983, pages 7-8)
1983 to 1985
studying at Royal Holloway, University
1983 Ted Curtis born
Karen Buck, a senior disability officer Hackney Borough Council from 1983
Manic Depression Fellowship started. (Later MDF The BiPolar
Link to website - See
Manic Depression 1996 -
On Our Own Terms 1997 -
Strategies for Living 1997 -
Meeting of Survivor Groups 2.3.2000 -
web archive started September 2000 - MDF The BiPolar
Organisation: September 2005
British Network of Alternatives to Psychiatry ran from
to 1988 (dates given by Stephen Ticktin in
1991). Speaking of the importance of the British Network
(May 2008), Peter
Campbell said it "brought radical survivors and radical
Stephen Ticktin Asylum Summer
describes himself as one of the founders and says "it was a loose
affiliation of users and mental health workers who met on a monthly basis
for purposes of both consciousness raising and campaigning. A number of
working parties formed around particular issues such as the law, women,
ECT, and major tranquillisers. In addition several study days were held ...
one on the
Closure of the Mental Hospitals, in 1985, and another
on ECT and major tranquillisers, in 1987"
Peter Campbell said (May
that it included forceful characters
, who had both
recently completed their Ph.D. theses (Shulamit in
1972). David was very important because of his trade
union and political links. He got users into the Houses
of Parliament and into conferences in Chesterfield
organised around Tony Benn. These links were lost
after David left.
1983 minutes of the Greater Manchester Disability Action Group
(foreunner of the
Greater Manchester Coalition of Disabled People) record that
they changed their name from the
Independent Living Group (facilitated by the fieldworker at the
Greater Manchester Council for Voluntary Service) because one of the
problems of encouraging new members was that the concept of
independent living was new and relatively unknown to many disabled
people. (email Anne Plumb 26.9.2010)
8.2.1983 Royal Assent to the
1983 Representation of the People Act. The possibility of staff
organising mental patients to vote worried those members of parliament
whose constituencies contained large mental hospitals. This fear was
assuaged by requiring registration from one's previous address. The
movement towards enfranchising long-stay mental patients must have had some
effect on the willingness of policy makers to listen to patients.
February/March 1983 First edition of OpenMind
Mind Out. It was launched and edited by Anny
Brackx who, at this time, had been a journalist for about nine years. It
was redesigned and relaunched in
1997 under the editorship of
Sara Dunn (now described as Executive Editor). Kathryn Perry
became editor in
was during 1983 that Barbara Poole became
Mind's conference office, which, I think, was part
of the Training and Education Department (Tessa Jowell head). The tutors
were Corrine Brewer, Charles Patmore, Chris Borne, then Auborn Wiseman.
Peter Campbell has suggested that much of the rapid change in Mind
with respect to user participation was due to the tutors' interest in this.
March 1983 to August 1983 Coventry Crisis Intervention Team initial
six months. [It was continued]. There was a "Follow Up Consumer Survey - 1
month after the closure of our research cases". - The "first fifty
consumers" were asked to
"share their views of the service they had been offered"
(Ann Davis, December
1988) - "After feedback from the Consumer Research" the length
of time clients could be seen for was increased from 6-8 to 10-12 weeks.
[March 1984 report from S.M. Newton, Project Leader]
- Featured in Speaking
9.5.1983 Royal Assent to the
1983 Mental Health Act (England and Wales)
June/July 1983 Ron Lacey,
in Open Mind claims that mental patients in France, Italy
and Holland have organised lobbies. Contrasts unfavourably with England. -
Also a letter form Peter Campbell.
August/September 1983 Peter Cambell
in Open Mind
found dead near his home in Shipley, York
September 1983 - November 1985
Mental Distress in Old Age (Hackney)
Peter Campbell moved to Cricklewood [33 Lichfield Road, London,
NW2"] and became
Camden Mind as a "volunteer" almost at once.
David Hill was not the
director at Mind in
Camden at that time.
"The material for the
"Psychiatric Oppression" video was shot
over a period of time (after Autumn 1983 as my bit was shot in my flat in
Cricklewood) and was
We're Not Mad We're Angry, but when it was actually edited
together into the video I am not quite sure" (Peter Campbell)
Monday 24.10.1983 Chamh Annual General Meeting at Shoreditch Health
Centre. Amongst those nominated and seconded for the executive were a
number of patient activists who were taking a leading role in suggesting
resolutions to organisational problems associated with the way Chamh had
been generated within the system (Community Psychiatric Unit) and did not
have complete control of its own affairs. Those elected included
David Kessel and Valerie (Argent) Roberts. Also active at the
meeting were John Wilson,
Andrew Roberts and
Joan Hughes. The
patient reformers brought in Felicity Tregear (not a patient) to attempt to
sort out Chamh's finances.
of Mind. Members of Glasgow
Link Clubs attended and were somewhat amazed
and angry that none of the presentations, seminars or workshops were
presented by patients. They made
their own presentation in
December/January 1983/1984 Peter Cambell
in Open Mind "Open Mind seems to be heavily weighted in
favour of the expert".
Mental Health Services Project, Chesterfield
Tontine Road Centre
North Derbyshire Mental Health Services Project
Contact Support Group
Andrew Milroy and Rick Hennelly prepared a background paper "Exploiting
Infinity" for the Mind Annual Conference in
another, "Changing our Ways", for the Mind Annual Conference in
published by "Mental Health Services Project, Chesterfield".
Rick Hennelly (1988)
, page 210, refers to these as "earlier
descriptions of the service and the tensions between ideology and practice"
From beside the Chesterfield Community Centre in Tontine Road
one can look up at the famous bent spire. The centre houses a large number
of projects, one of which was a North Derbyshire Mental Health Services day
centre for people becoming reestablished in the community. In the
mid-1980s this became run on increasingly democratic lines and was known as
the Contact Support Group [first half of 1985] -
Ivy Buckland from
the centre was the
Survivors Speak Out Treasurer.
Ernie Morris, another user, produced the
first Survivors Speak Out newsletter. Rick Hennelly, a social worker
at the centre was very active in the formation of
Survivors Speak Out
Camden Mental Health Consortium (CMHC), possibly not with
that name, was founded in 1984. in response to the planned closure of
(Campbell, P. 1987)
Diana Rose "became part of the fledgling service
user/survivor movement in the UK" by joining Camden Consortium. See
The first Draft Constitution for Consortium is
dated 1985, before the MIND conference. It contains no provision for users
to be the only members, or a special, full category of member but refers to
promoting a 'strong consumer voice'. (
Rose, D. 2000).
Survivors Speak Out: See
summer 1986 Asylum) -
"Don't ask me why people in Survivors Speak Out should live in Camden"
Rose, D. 2000)
Before September 1987?
1987 "Giants and Goblins. A Description of Camden Consortium's
Campaign to Change Statutory Plans" -
Peter Campbell was
"Public Relations Officer of Camden Consortium and secretary of Survivos'
Speak Out. - Camden Mental Health Consortium's address was c/o Emma Baatz,
8 Burgess Hill, London, NW2 2WA
The group remained active
until 2009, describing itself as "the largest User Group in
the London Borough of Camden. Its members are people who use or have used
the Mental Health services and live or work in the Borough. Associate
Members are people or organisations who for some reason have an interest in
the Mental Health Services provided in the Borough and support the
objectives of CMHC. Membership is free."
Schizophrenia and Human Value (based on
Anne Rogers graduated from the Polytechnic of Central London.
She took her M.Sc at Bedford College. "Subsequently I gained employment as
a research officer in the Legal Department of National Mind, exploring the
implementation of Section 136 of the Mental Health Act and became
interested in a broad range of mental health issues including civil
commiment, coercion, drug treatments and user involvement".
(external link) -
Wednesday 9.5.1984 C. Heginbotham and Chris Shaw from
Social Services Committee. No mention of consumer's voice. Miss
Shaw spoke about
annual conferences directed towards a very large
professional audience with topical themes each year, for example
the forthcoming one is going to be on the whole range of after
care and is
there life after mental illness and the rehabilitation services which are
available" (SSC 1985
volume 2, page 142).
Wednesday 16.5.1984 Alison Wertheimer, Tom McLean and Derek Thomas
Campaign for Mentally Handicapped People
Social Services Committee. The memorandum submitted by the group
contained recommendations (SSC
volume 2, pages 190-191), including
1) All policy-making and planning ... should take the principle of
normalisation as the starting point
2) Consumer involvement Far greater consumer involvement is needed
at all levels of service planning, management and delivery. The consumer is
primarily the person with mental handicap although some people may also
need or wish others (families, friends) to advocate on their behalf. We
should like to see much greater support for the growing self-advocacy
movement in this country."
mental handicap schemes
are on the move ... mental illness schemes remain ... stuck in the ...
Hackney Mental Health Action Group formed "by local patients,
ex-patients and other people".
Doug Tilbury, a
Hackney Social Worker who had been a friend of Hackney Mental Patients
Union, was a key person in this group. Apart from Doug, the activists I
remember were patients: Including Cathy Pelican [Pelikan?] -
Ian Ray-Todd -
Lisa Haywood -
Jim Read -
David Kessel - Jim
has suggested that the group was a spin-off from the Hackney
Day Hospital Patients Committee - But that does not fit the
Saturday 23.6.1984 Launch of
The Phoenix patients' publication at the "Conference on
Normality, Normalism and Mental Health" - alternatively billed as Phoenix
Cooperative Discussion on "Mental Health and Illness".
2pm-6pm Stoke Newington Community
Centre, Old Fire Station, Leswin Road, N16.
August 1984 Women and Mental Health group meeting in Hackney
1.8.1984 Following an overdose, Valerie (Argent) Roberts was admitted to Hackney
Hospital. Discarded poems were rescued from the waste paper bin. She was a
psychiatric inpatient until November, after which she was a day patient for
several years. This was a period of poetic and organisational creativity.
The organisational creativity may have been helped by her being a
Community Health Council member. - See
Day Hospital Patients Committee
26.9.1984 The Guardian: "'The agony of tranquillity': Jim
Read and Kath Arnold, who both once took tranquillisers and now run groups
for users, cite Tamara's case to show the pitfalls of withdrawal and how to
cope with them". - See -
October/November 1988 -
- 1996 employed on Open University
2003: On Our
Own Terms -
1.11.1984 Community Care "Not so tranquil" by Kath Arnold and
Jim Read. It ends: "The Government recently announced life
sentences for heroin pushers. What is to be done about the entirely legal,
highly profitable and even more destructive trade in tranquillisers?"
22.10.1984 to 23.10.1984
Mind Annual Conference (Kensington
Town Hall). Theme "Life after Mental Illness? Opportunities in
an Age of
Unemployment" - Possibly the first
with a user presentation (By members of
Glasgow Link clubs) - Also
Chesterfield presentation. The conference notices mention three
"special features" this year:
- Greater opportunity for conference members to make their own
contribution to the conference.
- Particular attention to the potential of voluntary groups like MIND
- Listening to what former sufferers from mental illness say about what
really matters where life after mental illness is concerned.
end of 1984 Conference in
Wakefield, West Yorkshire, on plans to close the mental
hospitals. It "became apparent" that an open, democratic, forum for debate
about all mental health issues was needed and, out of this, the magazine
Asylum was conceived
In the United Kingdom, the mid 1980s saw a revitalisation of locally
organised democratic organisations of mental patients, linked together in
networks. Support and funding for these developments from national
organisations, notable Mind, meant that the movement had the
grow and that some user/survivors could develop a career as advocates of
one kind or another.
Something exciting beginning to happen?
. The perception of dramatic national change, between
and the summer of 1986, focused on
, was the subjective experience of
moving from "isolation" to being "privileged at conferences". Peter
argued, in the summer of 1986, that his subjective experience mirrored "the
comparative rapidity of the consumer movement's advance out of obscurity"
(A View from the
, by Peter Campbell
Summer 1986, pages 8-9
For four years prior to 1989 (An
October 1989 Report) "the development team at
Good Practices in
Mental Health (GPMH)... focused on establishing district-wide
mental forums. Examples include the
Islington Forum, Lewisham Users Forum
and, most recently, Connections in Harrow"
Winter 1984/1985 - Hackney Day Hospital Patients Committee
established. [Note that in
said this had existed for "2+ years"]. Those active in estabishing this
included (I believe)
Valerie (Argent) Roberts - Sheila Nash - Connie - Kathy
(Cathy Pelikan?) and
Alan Leader joined sometime later.
Alan Hartman went to Manchester. See
Aware "formed in 1985 by a group of interested patients, relatives
mental health professionals, whose aims are to assist that section of the
population whoses lives are directly affected by depression".
1985 The Greater Manchester Coalition of Disabled People founded.
One of its founders was
Ken Lumb. -
External link to website.
Frank Bangay's Stigma No.3, a poem that was published in
What They Teach in
Song - "You see, I believe in causing a fuss - at least we
can... make someone think".
28.1.1985 Social Work Today 'Fighting mad' by
Jim Read, who describes it as his "personal manifesto" and
comments that he "cannot imagine getting such an article into a
professional journal today". It ends "But what will also be required is a
challenge to the basic structures of our social, political and economic
system. Capitalism depends too much on turning love and happiness into rare
commodities. The change we want, the wresting back of control over our
lives, will come more readily if everyone recognises the part the mental
health system plays in keeping us all in place, and we challenge it at
30.1.1985 Printing of the
Second Report from the Social Services Committee - 1984-1985 session - on
"Community Care with special reference to adult mentally ill and mentally
handicapped people". [Government response was Series: Cmnd.;
Consumer voice paragraph 31:
"...we have had difficulty in hearing the authentic voice of
the ultimate consumers of community care. There have been considerable
advances in techniques designed to enable and encourage mentally ill or
handicapped people to speak for themselves... But there is a long way to
go. Services are still mainly designed by providers and not users, whether
families or clients, and in response to blueprints rather than in answer to
demand. Matching the service to the consumer rather than vice versa should
be the one central aim of community care in the future. We recommend
all agencies responsible ensure that plans for services are devised with as
well as for mentally disabled people and their families"
Consumer view paragraph 148:
"Too little attention has been paid in the past to the views of
those most closely affected by the policy of community care - mentally ill
and mentally handicapped people and their families... Many of the less
severely disable are able to express their needs and wishes most
articulately, as the Committee saw and heard on visits. For those unable to
express their own wishes, some form of advocacy may be very helpful."
We recommend that the Department lay an obligation on authorities to
ascertain so far as practicable, and give due consideration to, the wishes
and feelings of mentally disabled individuals for whom a service is
provided, and in particular where closure of a long-stay facility is
contemplated. We also recommend that efforts be made to facilitate the
participation of individual mentally disabled people in the planning and
management of services
[Bold in original. In examining the report and the evidence, it is clear
that the impetus for the "consumer view" did not come from organisations
from organisations like Campaign for Mentally
, and from the Committee itself.]
"the idea of a Consumer Network has been around for some time and was in
fact presented to the policy committee in
January 1985. The idea was
endorsed by the Council of Management in
(Ballot 1 Autumn 1986) - See
Autumn 1986 - Summer
MIND Consumer Network (idea for)
PROMPT changed its name to
16.3.1985 British Network for
Psychiatry Study day on Closure of the Mental Hospitals ("in
which we looked at the processes and objectives of current plans for the
closure of large psychiatric institutions.)
11.4.1985 Annual General Meeting of the Grimsby Cleethorpes and
District Local Association for Mental Health Presentation of
Life after Mental Illness
Education and Action Group. In Inside Out Issue 8, p.5,
Christine Cowan) adds that the show will be presented at
Brighton in July. "Graham Kennedy, Christine Cowan and Thomas
Graham who appear on the slide show have been invited to participate in the
conference along with LINK/GAMH's Assistant Director, Jo Burns. All will be
taking an active role in the presentation and anticipate a lively audience
discussion afterwards. The... Congress... is a unique opportunity for users
of psychiatric services to air their views and be taken seriously. Money is
the real problem for financing the trip, and any donations would be greatly
appreciated. Please send to Education and Action Group, LINK/GAMH, 2
Queen's Crescent. Glasgow". It is not clear if they got to Brighton. Jo
Burns spoke on "New Approaches to Women and Mental health in Scotland".
Summer 1985 Family History Group at the Hackney Day Hospital
(Mondays). Members co-counselled for support. Each drew up a family chart
and a chronology of his or her life.
Valerie Argent's work has fed into
July 1985 British Network for
Psychiatry paper "How would you plan a psychiatric service in
Britain, and for what end?"
World Congress of Mental Health in Brighton.
Speaking from Experience - a video about user involvement
compiled and presented by
Thurstine recalls that in 1985 there was very little interest in the
training video and in service user participation amongst the mental health
professions. This was "not on their agenda and if anything they were
opposed to the idea".
conference organiser, was concerned that not enough service users would
come to the Patients to
conference in November. To help, Thurstine phoned a day
centre in Brighton, which was known to be quite radical, and spoke to the
manager. He asked her if she could get together a group of staff and
service users to go to the conference. She was not keen and he thinks her
response "but we go to conferences to get a break from the clients" says a
lot about staff attitudes at the time.
The following is the text of a handwritten leaflet distributed at the
conference by some ex-patients from Holland:
The Congress Mental Health 2000 is supporting injustice
by not rejecting 'expert' knowledge of psychiatrists
By calling human suffering illness the oppression is obscured.
Consumers are not mad, BUT ANGRY
By continuing the idea that you can talk for somebody else.
Make it possible for all consumers movements to come and to speak for
The need to change all this will be really helped by:
- no 'generous' moneygiving to some consumers (the English
hidden away between the entrance and the elevator).
GIVE FREE ENTRANCE TO ALL CONSUMERS
and offer to share all their costs
- not only rational stilted talks but moveable emotional/warm meetings too,
where you can shout, scream, touch, cry, to express your anger!
- TO CHOOSE TO CONFRONT the Conflicts rather than to pretend
"harmony". Conflicts are necessary to change unequality, which is denied.
But: out of their 'expert' superior position psychiatrists define real
conflicts as "personal problems".
It is significant that the elitist nature of the Congress is reflected in
its having been held at such venues as the Brighton Cnference Centre and
hotel Metropole etc. Why not organise it during the holidays in empty
school buildings, where each group can cook once??
Joyce, Monique, Aukje, Doetie
Translated and corrected by Siobhan Kilgurriff
Monique vld Mye / ex-consumer, worker in "patient movement"
Doetie Bakker / starter of some mad things, no more consumer
Aukje Westra / have been "mad", now working for "opatients" councils
Joyce Huugland / starter of a run away house, unemployed full of activities
3.7.1985 Peace News "To be ourselves - challenging the abuses
of psychiatry" by Jim Read. It included a list of resources such as the
Speaking from Experience -
We're not Mad - We're Angry [??] -
attended a branch meeting of Hackney Workers
Educational Association to discuss running a class on
"Your Mind in their Hands - Politics of Mental Health" at
Centerprise. The course ran on Tuesdays from 17.9.1985.
Summer 1985 Ceramic Hobs band started. Members are largely current
or ex-psychiatric patients. Bedrooms and Knobsticks in 1988
contained one of their songs. After 1988 their existence ceased until
relaunched in 1995. Four albums since - Psychiatric Underground
(1998), Straight outta Rampton (2001), Shergar is home safe and
well (2004) and Al Al Who.
Psychiatric Underground was their first album in 19 and Straight
5.9.1985 Victoria Helen Smith born.
External link to biography
OpenMind No 17 "Getting Back to the
Starting Line" - Jim
Read's personal story about being in
The Cassel therapeutic
community, with some more general comment about its strengths and
Monday 8.10.1985 Chamh Annual General Meeting at Shoreditch Health
Jim Read had been appointed as Chamh's (first) counsellor and
was due to start in November.
Wednesday 20.11.1985 Mental Distress in Old Age: Time for
Action published by City and Hackney Community Health Council.
1995/1996 was the official start of the survivor movement in England
That is - it is the date that has been celebrated as the start by bodies
Mind and the
Centre for Excellence in Birmingham.
Thursday 28.11.1985 and Friday 29.11.1985
From Patients to People
Charlie Reid (left) -
Elvira Ridley (top) -
Thomas 'Tam' Graham (front) - Kathy (top right) - and
Vince Edkins (far right), members of Glasgow
Link group, feature on the cover
Social Work Today on Monday 9.12.1985. With Viorel Vernea, they had
made a presentation at the
Mind conference in Kensington Town Hall.
With them in the photograph are (centre) Jo Burns, a
Glasgow Link clubs - and a gentleman we have
not identified (bottom right) who is holding the slides used to make the
presentation. They are sitting on the steps of
Kensington Town Hall after making the presentation.
4.12.1985 Lord Ennals in the House of Lords: "a two-day
conference organised last week by MIND, under the heading "Patients become
People"... I believe that people who are patients must be consulted about
their own future. They are people as well as patients... There is no
question of patient power. It is saying that patients are people. They
should be consulted about their own future. Often of course they are in no
position to decide their own future, but they should be consulted about
it... full consumer participation in service planning and delivery should
take place as of right
Lord Mottistone House of Lords: "I have here
the programme of the
conference that he chaired last week. I must confess that the titles of the
subjects spoken about frighten me. It seemed to be a conference more on the
politics of civil liberties than on care for the mentally disabled."
December/January 1985/1986 Peter Cambell
in Open Mind "It seems MIND wants to run things on their
terms. It is MIND for the mentally ill not MIND with the mentally ill."
Finding Our Own Solutions: Women's experience of mental health care
by Women in Mind, published by Mind in 1986.
Mentions - Women's therapy in
Yorkshire begining 1979 (pages 77-81) -
White City Estate, West London, project, initiated by Sue Holland in 1980
(pages 81-83) - Birmingham Women's Counselling and Therapy Centre, planned
1981-1983 (pages 84-85) - Bristol
Women and Mental Health (first open
meeting 1984) generated
Womankind (pages 102-103) - 1983 Scottish
Women's Health Fair and Glasgow Women's Health Fair (pages 103-104) -
Islington Women and Mental Health (grant 1983). Jan Wallcraft -
Womantalk, York, Summer 1985, the first women's studies class for
women receiving psychiatric treatment. Organised by Marilyn Crawshaw. A
second class started in Leeds. (pages 71-4). -
Bristol Women's Therapy Centre was established in 1986 as a
registered charity. "We provide counselling, group therapy and on-going
support to women in the Bristol area" (2009).
Finding Our Own Solutions 1986 description: .
Woman and Mental Health group set up in May
1985 to explore funding possibilities secured "funding under the DHSS
Helping the Community to Care scheme". Womankind is "based at
the university settlement in Bristol"
[website] "accountable to the settlement but
managed by a separate committee". Aims to provide effective mental health
resources for women - to initiate self-help groups - to assess need
accurately - to promote health - to provide information - to liaise with
other agencies. "It is a multi-racial project which aims to confront
racism, oppressive stereotypes and prejudices of all kinds. Womankind
evolved because women from different backgrounds wanted to gain an overall
picture of how women are seen and treated inside and outside the mental
health system. We hoped to develop and understanding of what it is about
women's lives that leads so many to seek help from the medical, psychiatric
and social services." "There are three paid workers - two development
workers (one black, one white), and a coordinator".
(Finding Our Own Solutions pages 102-103)
August 1988 description: A women
and mental health self-help project, employing workers with special
responsibility for working [with?] Black women and women from other ethnic
minorities, a volunteer coordinator and a worker helping woman coming off
tranx. Support for self-help groups, information, contacts, workshops,
talks on women's mental health needs, drop-in groups, resources for black
women. (Mindwaves August 1988)
Summer 1986 -
Address List May 1988 -
Bristol Crisis Service for Women
"Bristol Crisis Service for Women is a voluntary organisation and a
charity. We were set up in 1986, to support women in emotional distress.
We particularly help women who harm themselves (often called self-injury).
This is how some people cope with their feelings and problems."
(source old website, now redirects -
Founder members included
Maggy Ross and Diane Harrison."for the first time in my life"
[I] "met other people who self-injured. I no longer felt a freak, I found
some people who understood because they shared similar experiences" (Diane
Notes from Mark Cresswell:
1986 - a group of women , mostly self-harmers, meet under the
auspices of BWMHN
[Bristol Women and Mental Health?]. At this stage the membership
the group seems to
have been Maggy Ross, Diane Harrison, 'Jane', 'Sally', 'Holly' and
'Anne' (see Ross, 1988).They provide mutual support and 'begin to
discuss the possibility of starting a telephone crisis line run
exclusively by women for women facing these crises' (Ross, 1988: 46; see
also Harrison [in Pembroke], 1994: 8).
1987 - this planning and support continue.
Tamsin Wilton (1995 p.28) informs
us that she was "active in setting up and running the helpline from
January 1988 Telephone crisis line
Ealing Mental Health Action Group
Probably 1986 that
David Hill became director at Mind in Camden. "He is
signing himself as director in early 1987" (Peter Campbell)
January 1986 A series of weekend meetings at Minstead Lodge in the
New Forest were paid for by the
on the initiative of
Survivors Speak Out was set up. The first meeting
(24.1.1986-26.1.1986) was of
about twenty people - much larger numbers came to later ones
January 1987 - and
1987). Users of a
Chesterfield day centre were bused down, picking up people from Nottingham
on the way.
[Interview 11 in
Contesting Psychiatry]. The Chesterfield
connection was an important point in establishing the
autumn 1987 event at Edale
the King's Fund Centre remained an ally, and the King's Fund Centre
continued to make a financial contribution to Survivors Speak Out for a
period of at least four years
(Anne Plumb). Lorraine described an animated discussion in which
name Survivors Speak Out was decided on - with survivor defined as
"survivors of a mental health system which eroded our
confidence and dignity, and survivors of difficult life experiences which
took us into the system
(Power in Strange Places p.16)"
Until 1988, Survivors Speak Out was the main network available to mental
health service users.
. The National Advocacy
Network (later UKAN) in
1986, but only became a network in the 1990s.
Survivors Speak Out
Peter Campbell February 2010
Peter was active in the formation of Survivors Speak Out
(from the November 1985 preliminary meeting). He was its first "Newssheet"
editor (from summer 1986) and played a lead role at Edale in September
1987. He was (formally) elected Secretary at the first Annual General
Meeting in September 1988.
Louise Pembroke was elected Education Officer. Peter appears to
have remained Secretary and (with assistance) Newssheet editor, until 1996,
when Louise became secretary.
Survivors Speak Out was founded early in
1986. For more than
ten years it was an important networking organisation for the
It owes its foundation to concerns that no UK service were represented at
World Federation for Mental Health conference in Brighton in the
summer of 1985. Some
money was found to enable two [?] meetings of
allies to take place and at the second of these, at
Minstead Lodge in the New Forest, the organisation was
established and its name chosen. [The name was chosen at the
January 1986 meeting - the first at Minstead Lodge.]
Survivors Speak Out had an individual membership with groups being able to
affiliate. There were two categories of individual membership - survivor
ally, an ally being someone who supported the group's aims and
objectives but did not define themselves as survivors/service users. A
number of allies played an important role in helping the organisation get
on its feet but when the constitution was developed
1988] and voted through allies were given no vote at AGMs and
could not stand for the coordinating
1990]. Nevertheless, Survivors Speak Out
continued to have an ally
membership throughout the remainder of the 1980s and the 1990s.
The main objectives of the organisation in the beginning was to produce a
newsletter [Began summer 1986] and, most importantly, to
organise a national
survivor activists could come together. This eventually took place over a
Edale Youth Hostel in the Peak District in the autumn of
The event was important as it brought people from different parts of the UK
together for the first time. About 100 people attended, including a small
number of allies. Not all the attendees were members of Survivors Speak
Charter of Needs and Demands was unanimously agreed and a public
statement opposing Community Treatment Orders was also agreed.
In the months following the Edale Conference it became clear that Survivors
Speak Out did
not have the resources to adopt a regional structure. Apart from anything
Mindlink was fast developing, building on
Mind's [then] regional structure.
Nevertheless, Survivors Speak Out played an important part in spreading the
word about the
possibilities of "self-advocacy" by sending speakers to local events where
service users were discussing action and by producing and selling a
Self-Advocacy Action Pack [early 1989] with practical
advice about how to set up and run a
local action group.
Although Survivors Speak Out had coordinating group members from different
parts of the
country, most of its core group came from London and the South East. As a
result it was often seen as a London group. For the first few years
organisation had no office or paid worker but operated from the Secretary's
Eventually it acquired an
an information worker 
who ran an information service. She was later joined by an administrative
worker. Throughout its history Survivors Speak Out was being run on
relatively small funds.
Gloria Gifford was Information
Network Co-ordinator from 1992 to 1996.
In addition to the Self-Advocacy Action Pack, Survivors Speak Out produced
Eating Distress  -
Stopovers on my Journey Home From Mars  (a
comparison of service user/survivor action in the USA, United Kingdom and
Self Harm: Perspectives From Personal Experience .
The latter was
the most successful publication, proving to be a pioneering work that is
still in demand.
Survivors Speak Out was more involved in facilitating action than in
traditional campaigning. It did campaign and lobby to promote "self-
advocacy". It did not, by and large, have agreed policies that it
campaigned around. One exception to this is compulsion and the Mental
Health Act where the group was always active, opposing any extension of
compulsory powers in the Act. For some years it seemed that its work was
helping to slow the move towards greater compulsory power but eventually,
the 2007 amendments to the Mental Health Act, including the introduction of
Community Treatment Orders proved a defeat for its long-held position. A
position it shared with much of the service user/survivor movement.
Survivors Speak Out's influence waned towards the end of the 1990s. This
was partly due to an inability to effectively replace the original core
group when they stood back from involvement and partly due to funding
drying up. It seems that Survivors Speak Out was never formally wound up
but it no longer plays an active part in the survivor movement as we enter
the second decade of the new millennium.
Nottingham Patients Council Support Group. This group led
to the establishment of
Mapperley Patients Council in September 1986
Nottingham Advocacy Group in 1987 - [See
On Our Own Terms
2003 Table 4 says this was an early example of the "first
patients' councils and user-led advocacy projects" (starting 1986).
A meeting organised by Nottingham Advocacy Group, in 1990, led to
the formation of the
United Kingdom Advocacy Network.
Another patients' council identified by
On Our Own Terms 2003 Table 4 is
Hackney Patients' Council.
This may refer to the Day Hospital Committee (see
Hackney Patients Council
dates from 1994.
Speaking from Experience was used as an aid in the setting up of
patients' councils in
Nottingham and Newcastle in 1986.
January 1986 DHSS Draft Circular Collaboration between the NHS,
Local Government and Voluntary Organisations [See
"planning should be directed towards meeting the needs of
individual patients and clients... Service providers, clients, their
families and community representatives including those of ethnic minorities
are to have the opportunity to make a contribution to planning, ensuring
the plans are seen by consumers..." (quoted
Collaboration for Change p.4)
was the contact person (it circulated
each month) for the
Hackney Mental Health Action Group meeting at The Old
March? 1986 Barnet Action for Mental Health (BAMH) established. The
Community Health Council being the prime mover. The initial input was
mainly from professionals. By September 1988, more users were involved.
They had grants from
National Mind, the local authority and the
18.4.1986 to 20.4.1986 "over the weekend of" - "concerned totally
with involving consumers in Mind services" -
Crawshawbooth resolution conceived towards end.
North West Mind conference at Crawshawbooth, Lancashire
Spring 1986 (Before 17.5.1986) Inside Out! Hackney's Mental
Health Newsletter No.1. "Some of us have been 'inside' and now we are
'out' as survivors of the mental health system." This carried a notice
about "We're not Mad - We're Angry", inviting people interested in being
interviewed to contact Dee Kraijj, Andy Smith or
Peter Campbell. Inside Out
could be contacted at the City and Hackney Community Health Council.
Asylum - A Magazine for Democratic Psychiatry sought to
be "the freest possible non-partisan forum for anyone in any way
involved in mental health work" The first issue had substantial material
on or including the
Campaign Against Psychiatric Oppression. The second included
some opposite points of view
Spring 1986: The first membership of Survivors Speak Out enrolled at
a meeting in Ivy Buckland's hotel bedroom at a conference in Newcastle.
(Survivors Speak Out Newsheet December 1988 , p.6)
9.5.1986 Meetings starting at Hackney Psychiatric Day Hospital
under the umbrella of the City and Hackney Community Health Council, Mental
Health Working Group. They were a developement of the
Hackney Day Hospital Patients Committee
established by patients over a year before. As one of the participants, I
(Andrew Roberts) see this as
revisiting the meetings first set up in
Valerie Argent (Roberts) and Lorna Mitchison were
active in setting the meetings up and Sheila Nash chaired. There is a
report of the meetings from Alan Leader in minutes of
2.11.1986 and a
Spring 1987 reported on the development of
this Patients Committee.
HMHAG (Hackney Mental Health Action Group) public meeting:
Psychiatric Treatment: Are Drugs Really Necessary? Homerton Library.
Saturday 2.8.1986 - Sunday 2.8.1986
Mind Annual Conference - Hammersmith
"Will anyone wanting to go to MINSTEAD LODGE for the
Out weekend (AUGUST 2-3) contact
Peter immediately on 450 4631 -
DAVE KESSEL please note !! - or you won't get a place - Peter
will answer any queries."
(Hackney Mental Health Action Group
notice for its own meeting on Friday 11.7.1986)
number 2: page 11 notice:
Survivors Speak Out Survivors Speak Out Conference 1986 is to be
organised after discussion between members of the following groups
Link: Glasgow Association for Mental Health
Tontine Road Centre, Chesterfield
Bristol Women and Mental Health Survivors Group
CAPO (Campaign Against Psychiatric Oppression)
Mental Health Consortium
British Network for Alternatives to
Mental Health Action Group
South West Mind
Survivors Speak Out wishes to launch a national self-advocacy movement for
users of the psychiatric services. Our first goal is to hold the national
conference, for which we are currently raising funds. [Contact
Ivy Buckland, Tontine Road Centre]
Survivors Speak Out No.1 - 50p
16.7.1896 First Meeting of the Independent Living Committee of
Hackney Forum for Disability. Sheila Nash represented mental health serivce
Late summer 1986? Alan Leader became a mental health service user in
Hackney Day Hospital - and an instantaneous patient activist.
Autumn 1986? Crisis Line - Bristol set up for women in distress.
Took calls from women all over the country.
Wouther van de Graaf interviewed Eric Irwin and Frank Bangay for
Asylum. The interview was arranged because of Eric and Frank's concern
about criticisms of CAPO in
Asylum. Wouther van de
Graaf unintentionally returned to the Netherlands with the tape of the
interview and, consequently, it was not published until
April 1989. In the
interview, Eric gave the first account I have traced of the 1973 Mental
Patients Union as an origin of anti-psychiatry and the proginator of
"The anti-psychiatry movement of which CAPO is a part goes back
1973, with the emergence of the
Mental Patients' Union and also, in the
same year, independently,
COPE, which was the Community Organisation for
Psychiatric Emergencies. Both these movements ran for three years or so.
Then some of us who were in COPE and MPU got together and found
which stands for the Promotion of the Rights of Mental Patients in
Treatment. That continued until April 1986"
[March 1985?] "when it was decided that we no
longer wished to have the words 'patients' and ,treatment' in the title. At
my suggestion we decided to change it to The Campaign Against Psychiatric
Monday 20.10.1986 Chamh Annual General Meeting at Shoreditch Health
Centre. Andrew Roberts listed present as a Chamh member; Lorna Mitchinson
as from City and Hackney Community Health Council;
Lisa Haywood and Ian
Ray-Todd with their addresses rather than an organisation. Lisa Haywood was
appointed to one of the two positions on the Executive Committee for
representatives of "former/current users". The other position remained
vacant. These positions had been created by a constitutional amendment at
the same meeting, which Lisa had seconded.
Jim Read was not listed as present.
Public Image - Private
Hammersmith Town Hall, London, W6
another consumer dominated conference.
Peter Campbell recalls that "there was a strong negative vibe
with people getting up from the floor and saying how badly they had been
did an article afterwards accusing us of having nothing positive to offer."
(email 4.4.2010). Full (plenary) sessions included a charismatic one by
David Brandon (director of North
West Mind at the time) and one run by three or four members of Survivors
Speak Out. The collective who made
We're not Mad - We're Angry ran a workshop
about the making of the film.
Survivors Speak Out and the
The British Network of Alternatives to Psychiatry both ran
stalls. This may have been the first time survivor groups had stalls
at the conference, as they did in many subsequent years (and I
expect still do). Survivors Speak Out lobbied Mind for a survivor run quiet
room at conferences. Peter cannot recall if one was provided at this
conference (email 6.4.2010). Entertainments,
Frank Bangay, took place in a pub in Parsons Green, Fulham. A
handbill for the survives.
Friday 14.11.1986 Ballot 1: "As a matter of urgency MIND (NAMH)
should develop a broad based consumer network to ensure that Mind's policy
and work is informed by and reflects the views of consumers of mental
health services". Ballot 2: The
Crawshawbooth resolution to Mind National
Conference: "All local associations must include at least one consumer of
mental health services on any management or executive committee by
MIND Consumer Network (ballot for)
On Our Own Terms 2003 Table 4
says: "1986 onwards Media impact is made by the emerging movement: Many
individuals speak out on radio, TV and in published articles."
We're Not Mad We're Angry 70 minute TV
Channel 4 from 11pm to ten minutes past midnight. (See
Multiple Image Productions.
Led by survivors, it was critical of the biomedical model of mental
illness. White and
black survivors give their perspectives on mental health services. Shown as
part of the MIND'S EYE season (a critique of Britain's psychiatric system
from the patients perspective), it is the result of two years collaboration
with a collective of present and former psychiatric patients. The producer
was Tim Langford and the director John Hay. - A 64 minute version
is available from Concord Media
November 1986 Breakdown on Capital Radio, produced by
Peter Simmons and Mark Halliley. Mental breakdown as experienced by two
young Londoners. The man is
Mike Lawson, who put the
programme online in August 2009. -
offline - The woman remained anonymous.
"A marvellous example of sound employed to open up another realm of
consciousness" (The Times of London). Breakdown won Gold at the New York
Radio Festival was specially commended in the Prix Futura Berlin.
Mind distributed a tape of the
programme. Cover illustration: Phill Ellinston. Capital Radio PLC. 1986.
Thurstine Basset's collection.
21.11.1986 Meeting of Hackney
Mental Health Action Group received a report from "Alan (who is
on the committee)"
[Alan Leader] relating to the Patients Committee at the Day
Hospital. "We also discussed the effectiveness of the Patients' commitee
and the Dutch model of Patients' Councils.
Jim will contact
Lorraine Bell to see
if she knows about videos or speakers about the patients councils. Lorraine
was the contact for
the next national meeting of Survivors Speak Out, noted at the
24.11.1986 Meeting that established The National Voices
Forum. Established by the
National Schizophrenia Fellowship - See
It changed its name to The National Perceptions Forum
Link to website about 2007, when it celebrated its
21st birthday. This is a network of people with the diagnosis of
schizophrenia for mutual support and recovery, and to eliminate stigma
On Our Own Terms
2003 Table 4 gives its "peak membership" as 500. The Forum's
Perceptions started in 2000 - Some web archive
official site started
20.4.2001 - The
leaflet on the web is first recorded 3.8.2001 -
Zyra's copy started on 25.12.2001.
26.11.1986 "Removing labels - Psychiatric nurses were given a
dressing down by the users of the service at the mental health pressure
MIND's annual conference. Martin Vousden found out why."
Nursing Times. 26.11.1986. "many of those who spoke from the floor
and conference platform, also appeared in the Channel 4 television
We're Not Mad, We're Angry, transmitted a week after the
conference. Which is appropriate timing because the conference was ...
intended to look at how public images of mental illness are formed".
Meeting of patients and ex-patients of
North Manchester General
Hospital that started a weekly group which eventually became
Manchester Users Support Group. It had this name by 1989. See
5.4.1989 Having a Voice Conference -
Alan Hartman in
Asylum April 1989
and address c/o
Tony Riley in
About 2001 Manchester Users Support Group became Manchester
Users Network. This established
its website in
Heart 'n Soul was founded in 1986 and based at the Albany
Theatre in Deptford. It consisted of a small band and 12 performers. All
people with learning difficulties.
London Disability Arts Forum was founded in 1986
What They Teach In Song - Poetry About Psychiatric
Experience - The first?
Mary O'Hagan set up Psychiatric
Survivors, in Auckland, New Zealand, after reading
On Our Own by Judi Chamberlin.
Stichting Weerklank (Foundation Resonance). See Wikipedia on the
Hearing Voices Movement - See below
1987 Althea and David Brandon Consumers as Colleagues Mind. 34
pamphlet. Thurstine Basset's collection
From 1987, Robert
Dellar was working for "various Mind affiliations".
(Mad Pride 2000,
8.1.1987 Chris Harrison minuted at a meeting of HAMHP (Hackney
for Mentally Handicapped People). He became a regular attender. probably as
senior disability officer Hackney Borough Council in succession to
Karen Buck. Discussion of taped minutes discussed at next
Out May 1991 -
Nottingham 26.11.1991 -
with Peter Beresford
with Peter Beresford
9.1.1987 Minutes of Hackney
Mental Health Action Group Item 11: "Users Meeting with Chris
Higginbottom of MIND
Lisa [Haywood] had
attended this meeting with users groups from different areas about issues
of concern to them. She will now be on the Planning Group for the next MIND
". At the same meeting there was discussion of setting up
an in-patients committee at the hospital.
23.1.1987 - 25.1.1987 A
Survivors Speak Out weekend at
18.2.1987 Meeting: "
Val Roberts spoke for the
Day Hospital Patients' Committee on
the problems as seen by the patients, and
Lisa Heywood spoke on
CHAMH and its involvement
with the patients committee over the 2+ years of the committee's existence.
Saturday 7.3.1987 British Network
Psychiatry Study day on the Use, Abuse and Alternatives to
E.C.T and Major Tranquillisers.
March 1987 Insight (Brighton) formed. In the summer of 1987 about
fifteen people were involved and they were seeking funding. "Write to
Richard Pennel, Brighton Mental health Group, 17-19 Ditchling Rise,
Brighton, BN1 44L" (
Asylum Summer 1987). By September 1988
it consisted of up to 30 users/ex-users and some allies. It met weekly "bi-
weekly there is a business meeting where users and workers from the
locality are invited to share experiences, knowledge and initiatives".
"Insight are quite involved in service planning. Members also have input to
ASW training and run other workshops. Members of Insight drew up
a draft Charter of Rights" and work was done on rights issues in liason
with a local Law Centre.
(Survivors Speak Out AGM September 1988)
Tuesday 5.5.1987 Constitution of Hackney Union of Mental
Patients set up "for the purpose of obtaining or devising useful and
gainful ways of work"
Joan Hughes, Tony
O'Donnell (the founder) and David Kessel prepare to leave
the Old Fire
Station, Stoke Newington for a Hackney Union of Mental
Patients expedition to Walthamstow Marshes
May? 1987 Bristol Survivors started after a large meeting to find
out what people wanted.
Address May 1988:-
BRISTOL SURVIVORS: Secretary Felicity Couch, 139 Ashley Road,
Bristol BS6 5NU.
Autumn 1991 Vivien Lindow: joined the (London based)
Survivors Speak Out Coordinating Group
Self-help alternatives to mental health services
by Vivien Lindow. (Also see
Susan Rooke Matthews and Vivien Lindow 1998
Notes for AGM August 2005 say "Bristol Survivors Network started
off as a branch of Survivors Speak Out over 20 years ago. Survivors Speak
Out folded and closed its London office a few years ago, but we kept going
mainly due to the commitment of Viv Lindow who unfortunately can't be with
us tonight. This is our first AGM, although we have a constitution, we do
not follow it to the letter. A Chair is usually decided upon at the meeting
and we usually have a Secretary (thanks to Claire Barnard) and a Treasurer.
This was Liz Macmin, now Pauline Markovitz with Susan Rooke-Mathews as
website archive 2008
Network's list of Service User/Survivor Support Groups
Over recent years those of us suffering from mental 'illness' have started
to organise ourselves in order to offer mutual support and to fight for
each other. Free from the control of funding bodies or the supervision of
professionals. For me they provide great hope for the future - at least as
much as the prospect of the medical industry coming up with new drugs.
The Patients Council
Open to all survivors/service users whether they have been to hospital
or not. Helen Hamilton is the paid worker for the group.
The Patients Council, Callington Road Hospital, Marmalade Lane,
Brislington, Bristol, BS4 5BT
Tel: 0117 919 5617
As a mental health service user group which also welcomes carers, this
is a progressive self help, lobbying and consultation group. They engage in
consultation with statutory and voluntary sectors to help share services we
use. Monthly meetings, guest speakers and a chance to access wider mental
health arena e.g. training,, conferences and an opportunity to engage in
lifelong learning, build confidence, overcome social isolation and become
empowered in a friendly, supportive environment. Meetings are held monthly
Marine Hill CMHT, Marine Hill, Clevedon. (Please call to check venue before
Meetings happen on the third Wednesday of the month from 2.30pm to
Contact: Sue Ricketts 01275 853 960
Bristol Survivors Network
This is a Bristol-wide group that helps and supports by campaigning for
anyone with mental health problems. Meetings are held on the last thurs of
every month (except Dec). For further information on where meetings are
being held please call tel no below.
Bristol Survivors Network, PO Box 2505, Bristol, BS6 9AJ
Tel : Pauline - 0117 924 8124 (daytime only) or Susan - 0117 923 1796
S.U.N - Southmead Users Network
This is a campaign and support group and members need not have attended
Southmead Hospital or be located in the Southmead Ward for further
information ring 07765 307 134 (weekdays 11am - 1pm
Hearing Voices Network
Every Tuesday 3pm - 4.30pm at Bristol Mind, 35 Old Market Street,
Bristol, BS2 0EZ. For further information contact: Mobile: 0789 423 0207
(answer phone) Tim / Glenn @ Grove Rd: 0117 973 5142
Mad Pride is an exciting campaign aimed at doing for mad people what
Gay Pride did for gay people.
U.K. Survivors Newsgroup
Very busy e-mail newsgroup of the big U.K. Survivors Network.
National Hearing Voices Network
http://www.hearing-voices.org Great web-site for all who hear
voices. You can call their national office on 0161 834 5768
"Bristol Survivors continues to meet monthly as a group and also has a
regular social meeting. It continues to campaign and lobby for better
mental health services." (Glenn Townsend email 6.4.2012)
Bristol Survivors Network
website April 2012
MIND Consumer Advisory Network (Steering Group for)
Notice that a steering group had been set up for a
MIND Consumer Advisory Network. It had been decided that the co-ordinator
would necessarily be a consumer.
Peter Campbell was a member of this steering group. Not all the members
were survivors. Others who were included
When Jan Wallcraft became the first paid worker (part-time), Peter Campbell
decided he could not be a mindlink person and a Survivors Speak Out person,
so he dropped out of any major involvement in MindLink. Although he has
always been a member.
Mind established its
Consumer Advisory Panel
She says she
"worked with the existing Consumer Advisory Panel, meeting a
host of stars such as
Lisa Haywood, Graham Estop and Anna Neeter"
Summer 1987 Islington Mental Health Forum, set up with assistance
from Good Practices in Mental
Health, was "now well established" and had "secured premises to
operate from". "They are particularly concerned about the closure of
Hospital and have started a Friern Interest Group which meets at
the hospital". For information contact The Old Darkroom, The Laundry,
Sparshott Road, Islington, London, N19 (
Asylum Summer 1987)
Asylum Summer 1987 says
New Patient's Council Support Group being established at Southampton.
The Southampton group was set up after a Nottingham Patients Council
Support Group Workshop. Southampton Patients Council Support Group
was started by a local user group in the
Department of Psychiatry. "The groups hold regular ward meetings
to discuss whatever the patients want to talk about - there are no minutes
or agendas, which patients do not want. There is Joint Fiance funding for
three years with a promise of lifetime funding if all goes well. They have
a say in Joint Planning but no office or other facilities" (Mindwaves,
Friday 31.7.1987 - Sunday 2.8.1987
Fourth Minstead Lodge meeting
Ingrid Barker and
Edward Peck, editors, (1987).
Power in Strange Places
- User Empowerment in Mental Health Services. London,
Good Practices in
Mental Health - Discussion includes patient councils and
Colin Gell, "Learning to Lobby, The Growth of Patients' Councils
Lorraine Bell, "Survivors Speak Out. A National Self-Advocacy
Ivy Buckland, "Power Through Partnership. An Account of the
Contact Group in Chesterfield" -
Peter Campbell, "Giants and Goblins. A Description of Camden
Consortium's Campaign to Change Statutory Plans" -
"The Case for Separatism. Ex-Patient Organising in the United States -
30 pages -
Anne Plumb collection. -
COPAC lists copies in several libraries. -
Review by Peter Tyrer in Psychiatric
"The Self-Advocacy Movement in the UK" by Peter Campbell
probably describes the period before Edale. He speaks of
Survivors Speak Out "acting as an umbrella organisation,
campaigning and fund-raising towards a national conference of service users
and their allies" (page 209). People like himself had adopted the terms
over the eighteen months or so since Autumn 1985 (page 209). He speaks of
"over a dozen groups in this country speaking and acting for themselves in
the area of mental health".
Hackney have self-advocacy groups,
and BNAP are based in
London. "Outside of London"
Nottingham and Bristol
also had "large and flourishing groups". "In other cities like Southampton
there are the beginnings of groups run by users" (page 209) [Compare with
Summer 1986 list of groups planning the conference]. He did not
think "more than 400 people at the most are directly and actively in
Britain at present". (page 212). "The majority of existing groups are
alliances of users and workers with a small element of 'carers', each
alliance weighted in a different way" (pages 206-207) Only CAPO and
Sagacity in Community Care (SICC) claim to be user only (page 206).
"In broad terms", Peter says,"there are three main types of group"
1) The national campaign groups:
CAPO (Campaign Against Psychiatric Oppression) and
British Network of Alternatives to Psychiatry
"Although based in London they address themselves to
the whole of Britain, do not concentrate on local matters but campaign on
major issues affecting the whole of the psychiatric system such as the
abolition of ECT, no compulsory element in psychiatry, the provision of
adequate facilities for withdrawal from major tranquillizers.They are
limited in size...but increasingly active in certain areas where they are
now being noticed..."
The locality based group London examples:
Camden Mental Health Consortium -
Barnet Action for Mental Health -
Hackney Mental Health Action
Group. "...often set up with initial involvement by community
health councils, concentrates on its local area and on the problems of the
psychiatric systems expressed in the local services".
"Groups connected to existing service provisions or which are themselves
supplying significant services"
Link attached to Glasgow Association for Mental health and
Contact at Tontine
Road Centre in Chesterfield are examples of the former, whilst
Bristol Women and Mental Health - an umbrella
covering a number of services for women in Bristol - is a notable example
of the latter." (page 211)
"Finally mention must be made of the
Nottingham Patient Council Support Group (NPCSG)
which is establishing the idea of patients'councils within psychiatric
hospitals along lines inspired by the example of the Patients' Councils in
Holland" (page 211)
Friday 18.9.1987 to Sunday 20.9.1987
Survivors Speak Out organised the first United Kingdom
conference of mental
health service users/survivor activists over a weekend at an Edale Youth
The team largely responsible for organising things were
Lorraine Bell as "coordinator" -
Ivy Buckland as treasurer -
Peter Campbell as secretary -
Jackie Biggs "publicity" -
Rick Hennelly (local
Friday evening: social gathering
Saturday Groups on topics suggested by people there, including *
Women and mental health * Major tranquilisers * The
Order * How to achieve user-involvement * Surviving without
The role of allies in self-advocacy and their relationship to users.
The conference produced a list of 15 "needs and demands" (Survivors
Speak Out 1987, Charter Of Needs And Demands (Edale
Conference Charter), London, Survivors Speak Out)
Mary Nettle entered the mental health system in 1977. There
was no discussion about medication or someone's problems. Treatment was
totally drug oriented. One day her Community Psychiatric Nurse gave her a
leaflet about the
Edale conference. She felt the description "survivor"
was just right and felt herself to be a survivor of life. She warmed to
the friendly but efficient style in whcih the leaflet was written, and went
to the conference with a group of people. It was a most amazing experience.
A great array of ideas was expressed, "and there was
holding it all together". Source:
(Two decades of change conference)
"The grass roots movement that created the Edale Charter, also
UK Advocacy Network (UKAN) in the early 1990s"
Autumn 1987 Towards the end of his life
Eric Irwin spent a lot of
time in the library at the Westminster Mind
headquarters on the Harrow Road. It was here in the
autumn of 1987 that he collapsed and was rushed to
hospital. For a while, Stephen
Ticktin looked after Eric in his (Stephen's) own home. Eric died
in St Joseph's Hospice, Hackney (see below).
October 1987 Publication of Asylum to Anarchy by
Thursday 8.10.1987 Inaugural meeting of the
London Alliance for Mental
Health Action (LAMHA pronounced llama) [Has also been
as 1.10.1987] - See
20.6.1989 - Active
1992. - See Rogers and
Pilgrim June 1991.
Mental Health Action Group AGM elected Lisa Haywood and Ian Ray-
Todd as co-chairs and Lisa Haywood to the "MIND Consumer Advisory Panel"
November? 1987 Mind's first Annual Conference outside
London was held in Blackpool.
Alan Hartman took part in a presentation about 24 hours support
with assistance from service providers Douglas Inchbold and Neil Harris
London Alliance for Mental Health
Community Treatment Order demonstration. March from Marble Arch
to the Royal College
11.12.1987 "Hugs not Drugs" Greenford, Northolt and Southall
Compulsory Community Treatment Orders
Survivors Speak Out Information Sheet by Dave Lowson.
(Anne Plumb collection). -
Just before Christmas 1987
Eric Irwin died in St Joseph's Hospice, Hackney after a year
long struggle with undiagnosed cancer.
CAPO was continued until 1991
largely by Eric's friend
Frank Bangay. After Eric's death it decided to
Survivors Speak Out. Frank's tribute to Eric was published in
Asylum Volume 3, No 1, Summer 1988. His poem "The Laughing
Flowers" ("Never really felt so sad before - I try to reach myself through
my craziness") was written in the Spring of 1988.
Naked Songs and Rhythms of Hope pages 17-18)
Mind Consumers Network
1988: Wokingham and District Mind founded. It affiliated to
Mind in 1989. Crisis House in Station Approach, a user
run crisis centre, opened by
Pam (Pamela) Jenkinson on
It is now West
Berkshire Mental Health Association.
Hamlet Trust established by
Peter Barham -
Its first project was to establish the Bradford Mental Health Advocacy
Bradford and Airedale Mental Health Advocacy Group)
Changes in organisations 1988/1989 - From
Rogers and Pilgrim 1991
Voices - the National Schizophrenia Fellowship funds an
ex-patient as an organiser. It describes its
meetings (Voices Forum) as a support group 'run by and for
schizophrenics'. At the time of the research it had a membership of
around fifty people. [Presumably just users]
Survivors Speak Out - a national users' organisation with
over fifty local groups. "It aims to facilitate communication between local
groups of users and their professional allies promoting self-advocacy. In
June 1988 the paidup membership of this group was 230" [Presumably,
allies and users]
Mindlink an information network facilitated by an ex-patient
salaried by national MIND. At the time of the research it had around two
In 1988 and 1989
Barbara Taylor a patient in
for three periods totalling about eight months. See
January 1988 Collaboration for Change - Partnership between
Service Users, Planners and Managers of Mental Health Services
Centre Discussion Paper by
Helen Smith. The outcome of regular group
meetings of people form
Good Practices in
- the National Council for Voluntary Organisations, Waltham Forest Health
Authority and the King's
"... a student on placement at Barony called Colin Murray, who was very
Survivors Speak Out... called a meeting called Democracy in
Psychiatry (Be Morris,
CAPS2010 p.43) - 8.1.1988 appears to be the earliest secure date
in the book Our Mad History. There are references to the stimulus of
86 MIND Conferences, where users were very vocal" (Be Morris
January to March 1988 Survey of City and Hackney Psychiatric
Services carried out following "intense criticism" by the City and Hackney
Community Health Council and others. "The patient questionnaires were
distributed through a specially briefed team of patient advocates drawn
from Community Health Council Staff, Hackney Mental Health Action Group,
Federation of Consumers of the Mental Health Services and the Family Centre
Staff (HCRE). One further advocate was an Administrative Worker from
CHAMH". April 1988: "Mental Health Services - Initial Report on
Survey of Views of Psychiatric Patients Mid January to End of February
1988" (CHCHC Mental Health Working Group). Later: City and
Hackney Health Authority Psychiatric Services. Survey of Mental Health
Facilities as perceived by the Providers and Clients 1988 Michael Lung
- Support Nurse.
Mark Cresswell describes "1988-1996" as "a period that witnessed
a first phase of self-harm survivor activism in England."
January 1988 Bristol
Crisis Line opened by
Bristol Crisis Service for Women - Telephone
Bristol 354105 Friday and Saturday
evenings, 9 to 12.30 - run by women for women in the Bristol area.
Counselling service for women feeling isolated and distressed - "received
media attention with articles focused on women and self-harm. The line
receives up to 12 calls a night, and women who have phoned often become
volunteers with the project. Volunteers are doing education work in
hospitals - talking to psychiatrists and social workers - and aim to
negotiate suitable consultancy fees" (Mindwaves December 1988) [Mark
Cresswell says BCSW starts to run a national telephone help-line for women.
Address May 1988 - See
8.1.1988 New Society "Asylums with Long Arms: Last month
mental health patients groups demonstrated outside the Royal College of
Psychiatrists in Belgrave Square.
Jim Read explains why". This was about opposition to community
treatment orders. A brief extract: "A recent national conference of
Survivors Speak Out, which attracted 100 participants, voted unanimously to
oppose CTOs, and set up regional coalitions to campaign against these."
Conference on Co-ordinated Care organised by what became
The Sainsbury Centre for Mental Health.
Have we got views for you
(1994) says "the views of service users were largely overlooked". This was
illustrated in the language of "cases" and "case managment". "This led to
The Sainsbury Centre's
first efforts to bring in a user perspective. A
group of users from around the country began to meet together to produce a
response to Towards Co-ordinated Care" See
Diana Rose -
Perspectives on Manic Depression -
The Patients' Case: Views from experience; Living
inside and out of a psychiatric hospital by North Manchester
Resettlement Support Group. Editors Neil Harris and Doug Inchbold. Also
Jeff Warburton. Produced by Harpurhey Resettlement Team and 'users' of
Springfield Hospital Manchester. Published by the Community
Psychiatric Nurses Association Publications, Rossendale. ISBN: 0948260203
22 pages. Sold for £1 by
Survivors Speak Out. Includes
Alan Hartman. See Asylum July 1989
May 1988 First
Survivors Speak Out Newssheet
Survivor Speak Out Address List May 1988
Distress Awareness Training Agency (DATA) established.
"Individuals with personal experience of emotional and mental distress
who provide service-user and survivor led training, research and
Describes itself as "the UK's longest established group of this
kind". - Three founder members were
Andrew Hughes -
Anne Plumb - and
Tony Riley. Helen Gibb joined during 1988.
20.6.1988 Date on proposal to formally set up a Mental Health
Awareness Trainers Group which accompanied the first application (late
DATA to the Disabled Employment and
Training Action Fund (DETAF) administered
by the National Council for Voluntary Organisations.
(Anne Plumb collection). The application was
to undertake initial organisational development work, to
look at ways of establishing contacts within the North West, to produce a
training course and to look at the type of organisational structure that
might suit DATA. It was designed to create 10 weeks of part-time work
for DATA members. "I had to drop out early days as I was busy with a spot
madness" (Andrew Hughes). See
November 1991 -
Autumn 1992 -
late 1993 -
June 1994 -
Asylum Spring 1995 -
6.10.2001 (website) -
21.5.1988 Oldham meeting of "North-West Mind Consumer
The first of the regional networks. Irene Whitehill was a
28.6.1988 Michelle Hanson's article in The Guardian "Letting out
the big scream inside" "self-destructive behaviour is not uncommon among
women. Their numbers are growing and there is little help for them", She
and 'Ellie'. Also about this time (mid-1988)
Maggy Ross published an article in a woman's lifestyle magazine
called The Company.
Consumer Advisory Panel Workshop - Harley Street
August 1988 Issue one of
Mindwaves - The Newsletter of the MIND
Consumer Network. At this stage, the network claimed about
Members were entitled to two years free membership of Mind. "So do
fill in the forms and send them back and you will be able to come to the
19th November in London to vote for the Council of Management"
Autumn 1988 First interviews by Anne Rogers and David Pilgrim in
research that led to Pulling down churches. The names of interviewees
have not been stated.
Peter Campbell and
believe they were interviewed.
Mike Lawson also appears to have been
Frank Bangay believes he was not.
Eric Irwin was dead. See
Survivors Speak Out Annual General Meeting at Hampden Community
Centre. Contact was
Lorraine Bell, Southampton.
LAMHA street theatre event "Psychiatry on
Monday 26.9.1998 to Thursday 29.9.1988
Common Concerns: International Conference on
Involvement in Mental
Health Services - Brighton.
The group to plan a national network first met in
Colin Murray, Be Morris and Anne Bardsley, were amongst those who attended
the Brighton Conference in September 1988... "the theme of it was user
involvement and advocacy. We started a bit behind them but we had got ahead
and things were more advanced here than they were down South. I think it
was me and Be and Anne sat pounding the table,
'we are doing just as well as them in fact we're doing better'
'Let's have a national conferennce in Scotland for users'
there is something to celebrate and shout about and bring more people
together". (Colin Murray
Autumn? 1988 "About a dozen users from all over England" met with
"staff at the
National Unit for Psychiatric Research and Development who are
preparing a report on "The Co-odination of care for People Disable by Long
Term Illness" for the DHSS"
October/November1988 OpenMind No 35:
"ECT - A controversial treatment: counsellor and former mental patient,
Jim Read, argues that Mind has failed to present the case
against ECT and ignored the viewpoint of many people who have received
treatment." (A response to Mind's special report which 'cautiously condoned
the use of ECT'.)
elected vice-chair of
Mind at the MIND A.G.M, replacing
Dr Hugh Freeman. Served
until 1994, when he was replaced by Judith Morgan-Freer. In his
Testimonies' interview, Mike Lawson
refers to "me being elected Vice Chair of National Mind as a
action, you know amongst survivors and our groups and lobbies". Mike says
(in an email) that his election "was immediately challenged by the Royal
College of Psychiatrists because of a claim against
David Hill for
promoting my candidacy by mailshot from
Camden Mind. So my inception was
delayed and a re-election announced. However my rival failed to stand."
remembers "reading in the pages of The Guardian, Hugh Freeman
(already/later deposed as vice-chair of Mind by Mike Lawson)
take on psychiatry against survivors and allies (the correspondence was
carried over several days).
Asylum Winter 1988. The cover of this
edition is displayed on the wall behind the Survivors Speak Out stand at
November 1988 Mind Conference below. The
edition contains a report headed "Mind 1987 Conference Report"
which also reports on the AGM that elected Mike Lawson (above)
"Scottish Users Interest Group" first met in December
1988 with a
view to forming a national network. From this inaugural meeting the
Scottish Users Network was formed, which has a current membership of
45 people, drawn from all over the country. The Scottish Users Network
adopted a constitution in October 1990, and charitable status has
been obtained. (from a letter from Brian Sinclair, the then Secretary of
the Scottish Users Network, undated but written in the aftermath of
1991 conference, which he had attended."
(UKAN archives). - See also
July 1989 -
December 1988 First edition of
Psychiatry in Transition: the British and Italian
Experiences. Contains some acknowledgment of users' opinion.
Section on "The Users' Perspective" contains an article by
"Users' Perspectives" about Britain and one by Maria Grazia Giannicheda"
called "A Future of Social Invisibility" about Italy. Both are mostly about
mental health policy in their country, but the issue of a consumers' view
Mind the Gap Theatre Company inclusive theatre group for
actors with and without a learning disability
1988 First United Kingdom
group established in
Manchester - See
Hearing Voices Network box
- On Our Own Terms
2003 Table 4 says: "1988-present The Hearing Voices network
(based on the work of Professor
Marius Romme in
began holding national events in 1990/1991 and now has 100 groups across
the country." See
Conference November 1990 -
Independent Hearing Voices 6.1.1991 -
1991 [??] -
1991 Conference -
1992 Conference -
1993 Conference -
Newsletter 10 -
February 1994 Newsletter 11 -
May 1994 -
August 1994 Newsletter 13 -
1994 Conference -
December 1994 Schizophrenia Media Agency -
1995 Conference -
1996 Conference -
1997 Conference -
McLaughlin Thesis -
First "World Hearing Voices
On Our Own Terms 2003 Table 4
says: "1988 Influential publications by service users/survivors emerge:
A notable influence on the movement" was the publication by Mind of a
British edition of "On Our
by Judi Chamberlin - an exploration of
the rise of the survivor movement in the US." "Numerous local
publications and newsletters by service user/survivor groups begin to
emerge, critically examining services and describing personal experiences."
Survivors Speak Out members who came up to early meetings in
Edinburgh when the movement was getting started here. Through these early
meetings Lothians' first user group was formed, Awareness, in 1989."
Awareness met at EAMH (now called Health in Mind), 40 Shandwick Place and
at Contact Point, Basement, 67 York Place. It was supported by Lothian
Mental Health Forum and developed into a steering group that led to
CAPS2010 pp 46-49).
Royal Edinburgh Hospital Patients' Council
Royal Edinburgh Hospital
"The Patients' Council was set up in 1989 and continues to be based in the
Royal Edinburgh Hospital. It facilitates collective advocacy for
and former patients of the hospital, bringing about change in the way that
services and treatment are provided"
Department of Health (January 1989) Working for Patients
Report). (Cm. 555)
London: HMSO, "recommended that consumers of health care should be involved
in future developments and evaluation of services provided by the NHS"
Since then "successive governments have sought to strengthen the role of
patients as active participants in their relationship with those who
(Mike Crawford, March 2001)
Lucy Johnstone Users and Abusers of Psychiatry: A Critical Look at
Traditional Psychiatric Practice, London: Routledge, 1989. See
March 1993 -
OpenMind 1994 -
Asylum 1994 -
Asylum 1999 -
Self Advocacy Action Pack: Empowering
Mental Health Service Users first produced by
Survivors Speak Out.
London Alliance for Mental Health Action anti-
advertising demonstration at the Imperial War Museum. Included
16.3.1989 "Mental health split" City Limits
"Groups lock horns over schizophrenia posters" Hampstead and Highgate
IMPERO (Irish Mental Patients' Educational and Representative Organisation)
Jan Wallcraft's article "Winning through against fear and
contempt" in Community Care described the
Mind consumer network.
(Anne Plumb collection).
Having a Voice Conference
5.4.1989 First session of Having a Voice Conference for people
who use Mental Health Services in North
Manchester. Organised by
Manchester Users' Support Group, North
Manchester Community Health Council and North Manchester Health Authority.
There were three sessions in all. The other two were on
19.4.1989 and 17.5.1989. See
Manchester index and
Having a Voice
"The group held its first two conferences in March this year. The first one
was for users, the secnd for professionals. There was supposed to be a
conference for both users and professionals but this didn'thappen. The
conference provoked a lot of discussion and a documnet summing up some of
the points made was typed out. The conference was aptly named 'Having a
voice' Norman Howard ~~
20.6.1989 Members of the
London Alliance for Mental Health Action were involved in
setting up and participating in a meeting in the House of Commons between
Robin Cook MP (then Shadow Minister for Health), Harriet Harman and Keith
Vaz, and "forty or more mental health service users, representing most of
the mental health action groups, Patients' Councils, Consumer Networks and
advocacy projects". "The meeting was chaired by
David Hill, Director of
Camden MIND, who has put in a great deal
of work and effort to convince the Labour Party to give greater priority to
mental health issues and the importance of consulting the 'users'." (Jan
Mindwaves Summer 1989, page 7)
Asylum July 1989
Nottingham Patients Council Support Group appoint a worker.
Mention similar developments in Brighton, Leeds,
Scottish Users' Network established.
Escher 1989. "Effects of mutual contacts from people with
auditory hallucinations". Perspectief no 3, 37-43, July 1989. In 1989 they
also published "Hearing Voices" in Schizophrenia Bulletin 15 (2):
209 - 216
Paddy McGowan recovered from Schizophrenia with the support of other
survivors and participated in the original study (Romme/Escher, 1989) into
hearing voices. See -
Irish Advocacy Network 1999
Patient advocacy- Report for Public Policy Committee
of the Royal College of Pschiatrists.
offline - This policy was reviewed in
Looking at self-harm: the first national
on self-harm to be held in the UK, "entirely organised by the recipient
movement" at the International Students House in Great Portland Street in
Louise Pembroke organised the conference as Education
Officer of Survivors Speak Out.
spoke a few words of
introduction and Louise Pembroke "chaired and co-presented with the other
speakers." One of the speakers was
"I'm Maggy and I started to cut my body 5 years ago. I go to
casualty and get hauled onto the psychiatric bandwagon. I am then given a
nice little 'label'. The current label is Schizophrenia. That's how the
professionals see me. I'm a self-destructive Schizophrenic. But how do I
see myself? I am a survivor of sexual abuse and a survivor of the system. I
know why I self-injure. When I feel I am losing control, I reach for a
razor and prove to myself that I can have control over my body. When I am
lost for words, my cuts speak for me. They say - look - this is how much
I'm hurting inside ... I'll tell you what self-injury isn't - and
professionals take note. It's not attention seeking. It's
not a suicide attempt. So what is it? It's a silent scream. It's a visual
manifestation of extreme distress. Those of us who self-injure carry our
emotional scars on our bodies." (Quoted in
Self-Harm Perspectives. This is an edited
Cresswell, M. 2004)
"I found it incredible to listen to individuals talking about
their...inwardly directed aggression and then to learn that in accident
and emergency departments some of them have been deliberately stitched
up without the use of anaesthetic". (Peter Campbell reflecting on the
Open Mind December 1989).
Asylum October 1989, p.16 says
"Congratulations for the pioneering efforts of the City and
Hackney Federation of Consumers of the Mental Health Services who went
ahead and organised the conference against all the odds". It notes, on page
17, that "following the success of the Self-Harm Conference" a conference
"Hearing Voices" is being organised for
Leader, City and Hackney Federation of Consumers of the Mental
Services, c/o City and Hackney CHC.
Self-Harm: Perspectives from
Personal Experience (1994) was a consequence of this
Crisis cards - Launched by the International Self-Advocacy Alliance
Survivors Speak Out in 1989, crisis cards are intended as an
advocacy device to be carried by
the person who has written it, to be used in mental health emergencies.
Crisis Cards were the invention of
, living at that time in Jackie's cottage in west
Wales. They called themselves the International Self-Advocacy Alliance
[Rhiadle, Llangrannog, Llandyssul, Dyfed SA44 6BG, Wales, UK - Telephone
0239 78661]. The
idea was patented and, being short of money, Mike sold it to Survivors
Speak out for about £75. (Information from Mike 31.10.2008).
Survivors Speak Out launched the card at its
Annual General Meeting
Survivors Speak Out AGM "Sixty-five members,
including individuals from the UK, Holland, Italy and West Germany
attended". Reference made to "more than a dozen local groups".
(Asylum October 1989, p.16)
16.9.1989: Press Release: "Crisis Card Launched" made by
International Self Advocacy Alliance
October 1989 Article by Chris Halford in Voluntary Voice
Good Practices in
Mental Health (GPMH)
"now offer a
resource to mental health user groups across London"
In the United Kingdom, the 1990s saw the further development of a
recognised and professionalised user movement. There are now statutory
requirements for consultation and the providers need someone to consult
with. Some survivor groups received significant funding. (See
King's Fund support from 1985).
June 1990, a
relatively small grant from
what became the Sainsbury Centre helped to start the National Advocacy
Network. The substantial
(and continuing) investment of The Arts Council in the users movement began
1991. That of the
£11,750 for Survivors Poetry in 1991,
£30,000 for Survivors Speak Out in 1992,
for a National Advocacy Network in 1992.
£25000 for Hearing Voices Network in
One of the main reasons for the spread of practical user involvement, as
opposed to theoretical, was the work of people from
Nottingham going around the country in the early 1990s and
supporting others to get
started. Much as the Dutch folks helped us...
(Colin Gell... email
Early 1990s The idea of
AdvoCard is conceived by service users and research and meetings
"The Ex-Patients' Movement: Where We've Been and Where We're Going"
by Judi Chamberlin - (National Empowerment Center) published in The
Journal of Mind and Behavior
Volume 11, Number 3, Summer 1990 Special
Issue, Challenging the Therapeutic State, pages 323-336 is mostly about the
movement in the United States -
Link to online copy
Whose Service is it Anyway? Users' views on co-ordinating community
care Edited by
Marion Beeforth -
- Vida Field - Brian Hoser
Research and Development for Psychiatry (RDP). -
Psychiatric Bulletin June 1991
Brian Hoser was, or became, the treasurer for the
National Advocacy Network
- Edna Conlan, from Milton Keynes Advocacy Group, was, or became the first
Rhythm of Struggle - Song of Hope
Justice for Women began in 1990
Hamlet Trust in Poland
Thursday 15.3.1990 - Friday 16.3.1990
User Involvement - The Way
Forward conference organised by
Nottingham Advocacy Group which led, eventually, to setting up
the United Kingdom Advocacy Network
April 1990 Relaunch of Bristol Mind.
See website - Bristol index -
Jeff Walker -
April 2002 UFM
18.4.1990 Date for which London
Hearing Voices Conference
May and June 1990
Nottingham Advocacy Group (£400)
Survivors Speak Out (£200) and
Research and Development in Psychiatry (£1,000) enabled
the planning group for a National Advocacy Network to meet.
Asylum Summer 1990
June 1990 Annual Report of
Camden Mental Health Consortium
collection) includes an example of user-professional research -
A user for Consortium devised
a simple questionnaire with a senior nurse to find out what users had been
told about medications, and what information they would like, as a
contribution to Bloomsbury Community Health Council's attempt to raise
awareness of the need for improved practice. Results (75 respondents)
"indicated much disappointment with the quality of information, and a
particular need for guidance on long term effects". Action on
recomendations had already been taken on acute wards at St. Pancras.
Helen Spandler's (unpublished) paper "An attempt to analyse the
mental patients movements with regard to the social and political period of
the sixties". She concludes
"The mental patients movement in many ways helped pave the way
for organisations such as
Survivors Speak Out and the various "consumer networks" in
Britain. Some ex-patients and activists joined Mind local
helped influence them towards a more radical approach to treatment, legal
rights etc. The
most recent campaign was that against the proposed
Community Treatment Orders in
1987 (compulsory psychiatric 'treatment' in
Wednesday 4.7.1990 Launch of magazine
Beyond Diagnosis - The first "Summer issue"
"The Voice in Scotland of people who have been diagnosed mentally ill - and
those with related experiences". The Steering Group, John and Anne
Macdonald, Marion Donovan, Vincent Donnelly, Jeff Frew, Julia White, Jeff
Haddow and Jimmy Milroy, held a wine and cheese party at the Stafford
Centre, Edinburgh, to celebrate the launch. Also an
autumn edition in 1990.
The intention was quarterly, but issue seven did not appear until 1994.
issue 6 -
issue 7 -
Scottish Users Network March 1994
August 1990 First United Kingdom People First Conference held
in Twickenham. Betty Steingold, Susan Baldwin, Susan Jennings and Elani
went from Hackney. They spent a whole week there and discussed many things.
Betty went to a conference last year, so many people knew her. Betty, an
active member of Hackney Action on Learning Difficulties (Previously
Hackney Action for Mentally Handicapped People) told the Conference,
that she did not want people to say "mental handicap". Other people spoke
about living independently and about getting jobs. Food and the
accommodation were good.
Asylum Autumn 1990
November 1990 First National
Hearing Voices Conference held in Manchester. See
Autumn 1990 issue two of
Beyond Diagnosis. Editor now Marion
Denovan, 146 Morningside Road, Edinburgh, EH10 4PX - who remained editor
for some years.
October 1990 Workshop on researching user involvement, Nuffield
Institute, University of Leeds. A collection based on this was edited by
Marian Barnes and Gerald Wistow (1992).
Asylum Winter 1990/1991
1991 Anne Bardsley Advocacy Report Edinburgh: Scottish
Association for Mental Health, 15 pages.
Alan Baker 1991 "On Hearing Voices and other Phenomena" in
Libellus Dementum (issue one?). Oxford Survivors.
(Anne Plumb Collection). See
Winter1991/1992. A letter was published in
Beyond Diagnosis 6 from Sarah Bell, OS Publishing, Oxford
Littlemore Hospital, Oxford, OX4 4XN, She enclosed "issue 2 of
Libellus Dementum which mentioned Beyond Diagnosis and hoped
it would mention Libellus Dementum. "Beyond Diagnosis will
shortly be made available to all members of OS in our new office".
Brian Hartnett (in London) "Around 1991, at the same time as the
company I worked for closed and I lost my job, I started to retreat into
myself. I am not sure when I started hearing peoples voices and exhibiting
signs of ill health. It crept into my life gradually. Thoughts began to
become vocalised in my head and I began to hear voices in the babble of
conversation in crowded places."
Sunday 6.1.1991 the Independent on Sunday published a report
by Christine Assiz, "Heard but not seen", on a
Hearing Voices conference
arranged by five mental health activists, connected to
"Any recovery journey has a beginning, and
for me the
beginning was my meeting with Lindsay Cooke my support worker, it was her
who encouraged me to go to the hearing voices self-help group in Manchester
at the start of 1991." Ron names Anne Walton,
, Terry McLaughlin and Julie Downs, and
as his "navigators" to sanity.
April 1991 "The Mental Illness Specific Grant (MISG) was
introduced under the
NHS and Community Care Act 1990, providing from April 1991
revenue grant for the development of social care services for individuals
with mental health problems"
Wokingham and District Mind's Crisis House in Station Approach,
Wokingham, a user run crisis centre, opened by
Pam Jenkinson. -
Asylum Summer 1991
"'Pulling down churches': accounting
for the British mental health users' movement"
Sociology of Health and Illness 13, 2, pp 129-148 -
See Literature List. -
The authors describe
themselves as "professional commentators on, or allies of the MHUM" [Mental
Health Users Movement]. They explain that they were members of Mind and of
London Alliance for Mental Health Action. Between
Autumn 1988 and 1989,
they interviewed ten people (seven users, three professionals) who were
also members of the
London Alliance for Mental Health Action and/or Mind -
Survivors Speak Out -
British Network of Alternatives to Psychiatry -
Good Practices in Mental Health -
Afro-Caribbean Mental Health Association -
Nottingham Patients Council.
From the Mental Patient to the Person by
Peter Barham and Robert Hayward, Routledge -
22.6.1991 Letter from
Ingrid Barker (now Newcastle Health Authority) and Richard
Greave in the
British Medical Journal. "As part of our work
establishing contracts for mental health services, both in Newcastle and in
other places around England, we have attempted to get a range of users to
help plan and to comment on contracts".
World Federation of Psychiatric Users -
First committee meeting - This was at the World Federeation for Mental
Mike Lawson attended the congress as Vice-Chair of Mind, but was
not minuted as attending tthe users meeting
28.8.1991 Orville Blackwood, aged 31, died after being given
injection of calming drugs in a secure unit at Broadmoor. See
Louise Pembroke (for
Survivors Speak Out) organised an Eating Distress conference.
The Eating Distress booklet published by Survivors Speak Out came out
of that. (Louise Roxanne Pembroke (editor) Eating Distress -
Perspectives from Personal Experience. Conference Papers. Survivors
Speak Out 1992 (1st edition) - 1993 (2nd edition. 23 main pages) - 1994
(Revised and reprinted edition). ISBN: 1898002002 (paperback) -
COPAC lists copies in several libraries.
European Network of those Affected by Psychiatry.
Netzwerk von Psychiatrie-betroffenen] formed in Amsterdam. (Press Release
exernal link in German) -
This evolved into the
European Network of (ex-) Users and
Survivors of Psychiatry
November? 1991 Second National
Hearing Voices Conference held in
26.11.1991 Mental Health Service Users as Trainers - Nottingham.
A "Training the Trainers" event in Nottingham,
jointly organised by
Survivors Speak Out -
MindLink - and the
National Advocacy Network Steering
Group. This, and the DATA event in
May 1993, were very early examples of service user
Training the Trainers events.
Distress Awareness Training Agency (DATA) applied for further
DETAF funding to host a "Training the Trainers" event. Initially scheduled
Autumn 1992, it was delayed to
29.5.1993 whilst DATA obtained further
support from Rochdale Council's Equal Opportunities and Central Training
By the early 1990s,
was no longer in existence
November 1991 Survivors Poetry founded 'to foster and promote
poetry workshops and performances for and by survivors of the mental health
system'. 16.11.1991 Survivors' Poetry event with: Ferenc Aszmann (MC
Poet) - Paulette Ng (Poet) - Raz and Sam (Music/poetry duo) - Peter
Campbell (Poet) - Pauline Brady (Singer)
- See also
Survivors Poetry was Arts Council funded. It received £11,750 from
Disability Projects for the financial year 1991/1992, There was no grant in
1992/1993, but from 1993/1994 there was continuous funding apart from the
crisis year of 2006/2007
On Our Own Terms
2003 Table 4
says "1991 Emergence of networks and groups for survivor art, poetry and
drama: A major network is Survivors' Poetry, which runs workshops and
performances, and publishes collections of survivor poetry."
Asylum Autumn 1991
Asylum Winter 1991/1992
On Our Own Terms 2003 Table
dates (some?) user-run services from 1992. It says user-run
drop-ins were established, including McMurphys in Sheffield and
Brixton Community Sanctuary in Lambeth. - Brixton Community
Sanctuary and Lambeth Community Fourum were projects
closely associated with
"By 1992 more than a hundred local survivor groups had
come into being, stimulated by the
1990 NHS and Community Care Act and the
Mental Illness Specific Grant (MISG) in 1991. These groups
became linked up through the creation in 1992 of the
United Kingdom Advocacy Network (UKAN)"
Department of Health consultation document Inspecting Social Services
"There is a valuable and up to now under-recognised role [in
inspection] for people who actually use the services, those close to them
and able to speak for their interests, and for other lay people" [Lay
Clare Ockwell oversaw the merger of the
Society for the Advancement of Research into Anorexia
(SARA) into the Eating Disorders Association.
and Escher : the Dutch experience : an
examination of the research and development work on voice hearing in the
Netherlands. Manchester : National Hearing Voices Network, 1992.
Paul Monks, a local artist, used an abandoned ward at
Hackney Hospital as his studio. With limited
funding, an open studio was created. "Several successful exhibitions later,
Core Arts was officially born, gaining charitable status in 1994."
The first Scottish Users Conference was held in 1992. The
second was held in
East Lothian Involvement Group ("Our voice on mental health
services") formed 1992 with funding from
CAPS (Consultation and Advocacy
Promotion Service). The group had guest speakers from East
Lothian Mental Health Forum, Disability Scotland and others) and took part
in consultation processes including curriculum planning for Mental Health
Nurse students at Napier University, Edinburgh. It became an independent
1.4.2000 - See
new website 2008
International Journal of Social Psychiatry, Vol. 38, No. 1, 30-35
(1992) "Changes ? What Changes? The Views of the European Patients'
Movement" by Ed Van Hoorn -
Clients' Union in Mental Health Care, The Netherlands
"People on the receiving end of mental health services have an
increasingly important role to play in the transformation of mental health
care. It is argued that user involvement in itself does not guarantee a
good outcome, but we need to take the views of (ex-)patients seriously
without trying to fit them into theories. Dealing with the, often
uncomfortable, relationship between patients and mental health
professionals, and that between patients and relatives' organisations, two
main strands in the European patients' movement are identified: those who
seek to abolish psychiatry (abolitionists) and those who seek to reform it
Tuesday 18.2.1992 10-12 noon Newham Mind Mental Health Public Talks
at Newham Mind, Lawrence Hall, Cumberland Road, E13. Psychiatric Survivors
Speak Out! Through Campaigning/Information/Poetry. Speakers:
(Co-founder and National Secretary of
Survivors Speak Out). A representative from
Asylum Spring 1992
MINDWAVES Summer 1992, pages 8 and 14:
Survivors Speak Out were recently given £30,000 by the
Health Foundation towards employing a worker. Their main
activities at the
moment include looking for an office base in London and producing the
updated Self-Advocacy Pack which it is hoped will be ready for the
conference in November. Survivors Speak Out's Annual General Meeting will
be on Saturday 31.10.1992 at Hampden Community Centre, Ossulston Street,
Euston. Details from Peter Campbell (home postal address).
National Advocacy Network Additional funding of £50,000 has
been received from the
Health Foundation. The National Advocacy
Network is also looking for an office. Elections to the first management
Commitee are proceeding apace, and an
inaugural General Meeting will be held on 29.9.1992 at the ICC
Asylum Summer 1992
Survivor's Poetry - From Dark to Night, an anthology
Hilary Porter and Joe Bidder, was the first publication of the
Survivors Press (London). 124 pages. ISBN: 1874595003
(paperback). A copy in the
British Library is the only one listed on COPAC. - See
||August 1992 MAD premiered at the Edinburgh Festival Fringe.
Written and directed by Jeremy Weller. The play was based on the
experiences of and acted by eight women who had suffered mental health
problems. MAD was covered by the BBC's Late Show and Channel 4 News. Won a
Scotsman Fringe Award and Evening News Award
Asylum Autumn 1992 contains
Helen Spandler's Socialist Patient Collective article. Helen
begining her MA at
Sheffield University in Psychiatry, Philosophy and Society. The course
leader was Tim Kendall who was involved in Asylum with
Alec Jenner. Alec, who had just retired as Professor of
Psychiatry and became emeritus professor, came back for the occasional
Nick Crossley taught the Sociology component of the course
18.9.1992 to 20.9.1992
"Psychiatries' Presumptions: European Philosophy and Psychiatry".
Conference organized jointly by the University of Sheffield Department of
Philosophy, the Section of ... Sheffield. Reported in
Asylum Winter 1992/1993 and
[May gave been jointly organised with The Royal College of Psychiatrist's
Philosophy Group] Followed by "fat cats" correspondence in Asylum
1 1994 and 2 1994
Inaugural General Meeting of the National
Advocacy Network It changed the name to United Kingdom
Advocacy Network (UKAN).
November? 1992 Third National
Hearing Voices Conference.
The Government set up a
Mental Health Task Force in September 1992
build up a balanced range of locally based services. The full membership of
the group and its support groups was still being finalised in January
On Our Own Terms 2003 Table
Mental Health Task Force Service User Group (part of
of Health's Mental
Health Task Force) set up. Produced
publications: guidelines for service
user charters and
advocacy, ran a series of regional service user conferences and Training
the Trainers events."
Anne Plumb: The User Group had three representatives each from
Survivors Speak Out, the
United Kingdom Advocacy Network and
Mind Link; with the brief
preparing publications on Guidelines for a
local Charter for users of a mental health service - Advocacy - a
practice; and Building on experience, a training pack for mental
service users working as trainers, speakers and workshop facilitators.
The Charter working group was
Jim Read and
- The Advocacy working group was
Ian Mooney and Tony Day - The Training working
group was Roberta Graley,
and Jan Wallcraft. See
... a Mental Health User Task Force
organised 11 events at which over 1,000 service users got their first
introduction to the possibilities of being involved.
(Colin Gell... email
See Sheffield 27.4.1994
- Manchester June 1994 -
Regional acknowledgements were made in 1994 to the contributions of:
Ian Mooney, Migs Noddings,
Terry Simpson, Maria Trainer, Patrick Ward, Michael Lockyer
Manchester. Karen Colligan,
Tony Riley, Ronnie Soeakma
Birmingham. Jane Stallard, Ros Caplin,
Roberta Graley, Jill Henley, Ian
Monney, Leigh Valance
Taunton. Helen Hamilton, Francis Halloran, Phil Savagew, Phil Craqcknell,
John Doveton, Mary Nettle
London. Ros Caplin, Partick Ward, Chris Harrison, Miriam Hastings, David
Crepaz-Keay, Colin King, Jan Wallcraft.
Saturday 10.10.1992 "World Mental Health Day 1992 was a
turning point for mental health service users, when representatives of
three national groups, Mindlink, Survivors Speak Out and the United
Kingdom Advocacy Network (UKAN) met the then Secretary of State for
Virginia Bottomley" [NOT CORRECT - SEE BELOW]
Monday 19.10.1992 Minutes of a meeting on or about the
Mental Health Task Force Service User Group
Friday 18.12.1992 Meeting with Virginia Bottomley
December 1992 Mary
Nettle self-employed as a Mental Health User Consultant, under
Enterprise Allowance scheme.
Asylum Winter 1992/1993
Leeds Mental Health Advocacy Group started 1993 -
External link to its history and the history of advocacy
archive - Became Advocacy for Mental Health
and Dementia in December 2007 "to incorporate and promote our Dementia
advocacy services" -
IT! Poems by Paulette NG copyright 1993. A tape in Thurstine
Basset's collection. Paulette NG was a member of
1993 Hearing Voices: A sociological study by Michael George
Grierson. University of Manchester, Department of Sociology Ph.D. thesis.
See Ron Coleman
Asylum Winter 1991/1992
Having a Voice -
Beyond Diagnosis, c/o
CAPS, The Engine Shed, 19 St Leonard's Lane, Edinburgh, EH8
Diagnosis issue six produced after an "extremely lengthy
delay". It included a letter about Libellus Dementum (Oxford, England) (p. ) -
a "Self help" article about
Express Group (Fife), which focused on a
theatrical performance at its Annual General Meeting in May 1992 (pages 10-
11) - A personal account of mental illness by Carolyn Raeburn, one of the
Mad at the Edinburgh Festival Fringe in August 1992.
Begining of 1993 City and Hackney Mind Advocacy Service established
at Hackney Hospital. Coodinator:
1993 Open Society Institute founded by George Soros in New York.
Peter Barham sent him a letter which eventually led to
substantial funding for Hamlet Trust work in central and eastern Europe.
Joan Hughes' diary: "One hour phone-in on Community Care on
Radio Four. Only five minutes devoted to calls from ex-patients living in
the community - and 55 minutes devoted to calls from relatives and
professionals. Emphasis is always on the worst cases."
29.1.1993 Letter from
Virginia Bottomley to Peter Campbell,
responding to a letter of 7.1.1993. "I very much appreciated meeting last
month with you and the Chairs of the other two organisations. It is so
important that mentally distressed people are actively involved both in
their own treatment plans and in the development of mental health
services." "I know that both
Mrs Conlan and
Ms Haywood are in contact with
officials and that you are all involved in the
Mental Health Task Force Support Group."
Community Care Support Force
February 1993 Two day event "when people from five local areas
(professionals and service users) came together to discuss their progress
so far in developing assessment and care management and how user
participation could be promoted."
26.2.1993 Participants at meeting: Pam Barette: Power House - Nasa
Begum - Blodwen Brewster: Community Care Support Force - Brian
Brianstocker: People First - Jane Campbell: British Council of
Organisations of Disabled People - Alice Ethrington: People First - John
Evans: British Council of Organisations of Disabled people - Phil Friend -
Roberta Graley : UK Advocacy Network (UKAN) - Millee Hill: Black
People Group (Action) - Michael Jeewa: Asian people with Disabilities
Alliance - Cheryl King: Power House: Facilitator -
Viv Lindow: Community
Care Support Force - Lucille Lusk: British Council of Organisations of
Disabled People - Sandra Martin: People First: Facilitator - Narendra
Mehta: Apna Ghar Housing Association - Jenny Morris: Consultant and meeting
chair - Andy Smith: Survivors Speak out - Albert Thompson: British Deaf
Association and Deaf Services Participation Project.
31.3.1993 User Participation in Community Care Services - A
series of documents prepared by Jenny Morris and
Vivien Lindow on behalf of
the Community Care Support Force
Peter Breggin visited the United Kingdom. He
"did a conference in Bristol with
Lucy Johnstone" which Peter Campbell was
supposed to attend, but did not, and "spoke at an event organised by
Hackney Mind", which is where Peter Cambell heard him. (email Peter
Campbell 31.7.2009). At some time, a Peter Breggin/David Cohen Conference
was organised in London by
Pam Jenkinson (Anne
Asylum Spring 1993
April 1993 Short article in Hackney Gazette said someone
(City and Hackney Mind?) was looking for volunteers who had used
psychiatric services to work in Hackney Hospital.
Terry Conway read and responded. This role led to
Mission statement of the (USA) National Association of
Consumer/Survivor Mental Health Administrators (NAC/SMHA)
"represents state mental health department senior managers who are current
or former recipients of mental health services".
29.4.1993 Meeting of
Mental Health Task Force Service User Group
David King explained the objectives, and
users listed their concerns. Jan Wallcraft
wrote a memorandum. The meeting was attended
by Peter Campbell from
Survivors Speak Out - Jim Read Independent Trainer - Jan Wallcraft from
MINDLINK - and Edna Conlan from UKAN
29.5.1993 and 30.5.1993
Distress Awareness Training Agency (DATA) "Training the
Trainers" two day event.
Mary Nettle, who had recently become a full-time user
consultant, delivered part of the programme. Sarah Berry, then at North
West Mind, helped with pre-publicity. One of the trainees, Munir Lalani, is
a current member of DATA.
First half of 1993
Experiencing Psychiatry: User's Views of
Services by Anne
David Pilgrim and Ron Lacey. Based on evidence from a survey of
the views of 500 users of psychiatric services. Macmillan in association
with Mind. 205 pages.
12.6.1993 Queen's Birthday Honours list included
"Mrs Edna Conlan,
chair, UK Advocacy Network, for services to
improving mental health" Order of the British Empire Member (MBE)
Asylum Summer 1993
27.8.1993 "Terms of Reference of the
Voices Forum National Committee". National Schizophrenic
(Anne Plumb collection).
28.7.1993 Meeting of the Charter Group (of the
Mental Health Task Force Service User Group) at Richmond House.
Terry Simpson says
"There seemed at the time something very symbolic in survivors meeting at
the heart of the Department of Health, at Richmond House". He still has the
early draft of the Charter that was discussed at the meeting.
Asylum Autumn 1993: "All Survivor
Issue. Diana Her Survivor Story".
"I had to more or less drop out of
by late 1993 through domestic commitments".
Scottish Users Conference was held in
November 1993. The theme was community care. Workshops were held to
determine gaps in services and to prioritise real needs as identified by
users. Tishe Shaw spoke on black and ethnic minority issues and Maria Fyfe
MP was the other speaker. A report was published in March 1994.
November? 1993 Fourth National
Hearing Voices Conference.
December 1993 - March 1994 Survivors' Poetry UK tour:
Manchester, Leeds, Liverpool,
Late 1993 Hearing Voices Newsletter no 10. Editorial
Nigel Rose Groups continuing to grow. Some survive only a short
while, some go from strength to strength. Hearing Voices Network National
Office (Manchester). Groups - Manchester, Liverpool, North Wales,
Kirkcaldy, Edinburgh, Wakefield, Oxford, South London, North London.
Stopovers on my way home from mars. Reflective journey through the
psychiatric survivor movement in the USA, Britain and the
Mary O'Hagan published by
Survivors Speak Out
Advocacy Information Pack published by
Good Practices in
in 1994. A copy in the British Library is the only one listed on
Wolf Howls [poems] by Paulette NG. copyright 1994. A tape in
Thurstine Basset's collection.
1994 Carol Jenkin started BUDDIES and
Pat Butterfield started ECT Anon. "...if it hadn't
been for the support we both gave each other, we couldn't have made it
through the negativity
being aimed towards us at our development stages." (Carol Jenkin, email
Buddies is a Mental Health Support Network and
Befriending Scheme (Black/multi-cultural with mental health issues is its
focus) which was originally based in Bradford, but has now moved to
Manchester where the city seems to support it and want it. (Carol Jenkin
established a mental health service users group in Ireland.
1994 "When I"
[Alison Faulkner] "first arrived at the
Foundation in 1994, June
McKerrow (the then chief executive) said: "Let's do some research that is
user-patient led". I was well connected with service users so got together
different people from user organisations such as
Speak Out and the
UK Advocacy Network as well as
Mind Link and the Brent user group, who had
done so much work involving members of the whole community. We also had
people from the
African-Caribbean Mental Health Association -
the questionnaire by committee and I did all the work in-between."
- This led to
Knowing Our Own Minds
Awaaz users group was set up in 1994 with the support and help
of Having a
1994 Self-help alternatives to mental health services by
Vivien Lindow 78 pages
ISBN: 1874690219 and Purchasing mental health services: self-help
alternatives by Vivien Lindow, 33 pages, ISBN: 1874690227, published
by Mind. 76 pages.
January 1994 The editorial team of Beyond
Diagnosis began to meet again. "We spoke about the
possibility of a relaunch and in the meantime... got on with producing
February 1994 Hearing Voices Newsletter no 11. Editorial
Distress or disability? by
Hackney Patients' Council founded. The founders were
Robert Dellar (coordinator for the City and Hackney Mind
advocacy team, whose office was on the ground floor of F Block) -
Terry Conway, social worker - Deb Percy, retired psychiatric
nurse - Earil Hunter, ex-patient - and Debbie MacNamara ex-patient.
(Robert, Terry and Debbie have articles in Mad Pride 2000.
At this time, there were only two other patients councils in the country
known to the group. The founders made a grant application to the health
authority and gained temporary funding for three months. At the end of the
three months, Hackney Patients Council was offered an annual grant of
£30,000 on condition that certain targets were met and certain pre-
for predecessors in Hackney Hospital -
- See below
1.3.1994 Have We Got Views for You - User Evaluation of Case
Marion Beeforth -
Edna Conlan - and
Sainsbury Centre for Mental Health.
13.4.1994 Accepting Voices. Understanding the Voice Hearing
Experience Brixton - The Hearing Voices Network.
1994). This was the first Hearing Voices conference to be aimed
at psychiatrists and mental health professionals. Speakers included
Sondra Escher -
Consultant psychiatrist Philip Thomas (University of Wales) on The British
Experience; Clinical psychologist Gillian Haddock (University of
Manchester) who developed the 'focusing' approach to coping with hearing
voices on Psychological Therapies;
Alan Leader, Helen Heap
Anne Walton on the HVN (aims, objectives, work) and
from HVN on
coping with the experience.
27.4.1994 "Forging Our Futures" conference at
the Forte Crest Hotel on Manchester Road in Sheffield
part of the
Mental Health Task Force process - Organised by
Roberta Graley and
Terry Simpson of
May 1994 Hearing Voices Newsletter no 12. Karina Carlyn, voice
hearer takes job as editor from
Nigel Rose. "We thought it was time that a voice hearer took
over the job as editor. There is a wind of change blowing through the whole
of the Hearing Voices network and we voice hearers are taking on more and
more responsibilities in the running of our organisation at every level. We
believe it is time we were in control of our destiny."
Funding of £25000 received from
Mental Health Foundation.
May 1994 Ron
(Manchester HVN) and
(South London HVN) attending conference in Maastricht organised by
27.5.1994 Annual General Meeeting of the
Forum. Issue 7 of
Diagnosis reports. Groups mentioned include "E.A.M.H." -
Lothian Mental Health Forum -
the Patients Council - Sprout -
said that UKAN "seems to have no representatives from Scotland" [John
MacDonald was on the UKAN board for several years as a Scottish
representative - Two UKAN tresurers were from Scotland and for many years
UKANs links with Scotland were strong. (Terry Simpson 2.6.2009)
June 1994 "Forging Our Futures" conference at
part of the
Mental Health Task Force process.
Andrew Hughes outlined
history of the
Distress Awareness Training Agency (DATA) (as since reused on
this web page). "A volunteer scribe from the audience that day,
Caroline Hellewell, is now DATA's most senior member". (Andrew Hughes -
former coordinator and treasurer DATA)
2.7.1994 Founding conference of
Psychology, Politics, Resistance
"Psychology Politics Resistance was founded in 1994 as a
network of people who are prepared to oppose the abusive uses of
psychology. Members of PPR in different places have organised meetings and
have been involved in a number of different campaigns. The purpose of PPR
is not to duplicate or replace but to network the many different groups and
individuals who have already been organising. Now our newsletter is
incorporated in Asylum magazine"
(discourse unit website)
Beyond Diagnosis c/o CAPS, 5 Cadzoow Place, Edinburgh, EH7
Summer 1994? issue 7 of Beyond
Diagnosis - "I'll stick my neck out here and say that issue
8 should be out before the end of the year"
August 1994 Hearing Voices Newsletter no 13.
Orville Blackwood Community Campaign "In memory of all those who
have not survived psychiatry". A picket of survivors to be held outside the
Royal College of Psychiatry... 11am to 1pm.
November 1994 Appointment of Hackney Patient Council workers: Eileen
Philip - Julie Hathaway - Phil Murphy - and Andy Martin (the present
November? 1994 Fifth National
Hearing Voices Conference.
November 1994 Judith Morgan-Freer, another user, elected vice-chair
of Mind, in place of
Mike Lawson. Mike had been asked to step down by Tim Durkin
(retiring chair) who had proposed Judith Morgan-Freer as Mike's
replacement. Judith served for one year and was succeded by another user,
3.11.1994 and 4.11.1994 Conference of the British Medical
Association on Core Values for the Medical Profession in the 21st Century.
"recognising that paternalism is no longer an appropriate model
for the doctor-patient relationship... argued that the relationship should
be a 'partnership of mutual trust' in which doctors should encourage
patients to help decide treatment and care."
(Mike Crawford, March
29.11.1994 and 30.11.1994 Conference "Forging our Futures"
held at Derby by the
Mental Health Task Force User Group to mark the
culmination of their work. A transcript was published in 1995
Forging Our Futures: Lighting the Fire. London: Mental Health Task
Force User Group - Conference proceedings, discussing work of the mental
health task force user group. Details examples of user involvement in
service planning and
On Our Own Terms 2003
says: "1994: National Service User Conference in Derby, attended by over
service users representing the movement, endorses national charter and
December 1994 Launch of Schizophrenia Media
Hearing Voices Network, 1st Floor, Fourways House, 16 Tariff St, Manchester
M1 2FN. Tel: 061-228 3896.
Health Matters Feature
1.12.1994 First World Assembly (and Fourth World Congress) of
Disabled Peoples' International held Sydney, Australia. Paper by
Gloria Gifford on "Psychiatric
System Survivors and the Disabled People's Movement".
The A.C.O.R.N (Advocacy and Community On-line Resource Network) project was
designed in late/early 1994/1995. The concept was
to use the media of the Internet to produce a service that would be useful
for communications, organisational developments and information and most
importantly a service that was open and independent.
World Wide Web is available anywhere so, Bolton is as equal as
Internet: ... we had a dream, the mental health user movement U.K
plugged into the Internet with pages crammed full of information for
individuals and organisations. Despite making our way up to a United
Kingdom Advocacy Networks management meeting early in 95 the management
committee decided to defer any active involvement in the project until a
decisive vote was had on the matter.. A bid to MHF in early 95 was also
(article by B.J. Brecknock)
: Forbidden narratives : critical autobiography
published. Republished 2003. 160 pages -
(Google books extracts)
- "about her personal
involvement with the
user movement - and how it resonated with her own experiences of women's
oppression and also her own experience of physical/mental breakdown" (Helen
About 1995 The begining of
Clare Allan's "lost decade" See
Daily Mail interview 4.3.2008
"National self-harm network" in
73, page 13.
Is the Writing on the Asylum Wall? by
the imprint of his "Action Consultancy and Training (ACT)" in 1995. Other
publications followed under the same imprint: Celtic Madness -
The Voice Inside and Killing Me Softly.
Gilbert formed Handsell Publishing in 1997. Handsell organised a conference
to mark ten years of the Hearing Voices Network in
1998 and then conferences on
March 1995 Meetings and draft
"ongoing statement" of
Asylum Spring 1995
Under the Asylum Tree - 15.4.1995 Survivors Poetry
150 Ossulston Street, Special Anthology Launch
BBC Horizon programme for and about people who hear voices. Many
more people contacting the
Hearing Voices Network.
10.5.1995 Beautiful Octopus Club, The Albany, Deptford, SE8,
Heart 'n Soul - 'the first cabaret club to open in London to
give expression to the culture of learning disabled people'.
Asylum Summer 1995
July 1995 National Conference in Manchester that was the culmination
Helen Spandler's research at
42nd Street into the needs and experiences of young people who
attempt suicide or self-harm.
August 1995 Survivors Poetry Scotland launched as part of the Out of
Sight - Out of Mind Exhibition at Kelvingrove Art Gallery (Glasgow). - See
November? 1995 Sixth National
Hearing Voices Conference.
November 1995 Lisa
Haywood elected vice-chair of Mind. She served until 2006.
Survivors Speak Out information sheets by Adina Halpern,
solicitor, were published in 1995: "The Survivors Speak Out Crisis Card"
and "Advance Directives".
(Anne Plumb collection). - See
Mind Advice on Advance Directives
Five or six years after the launch of
at the Survivors Speak Out AGM in 1989, Peter
Campbell recalls someone from Mind coming to Survivors Speak Out and saying
"Mind are not interested in the idea of Advance Directives - Will you take
(1995) Direct Power: A Resource Pack for People Who Want to Develop
Their Own Care Plans and Support Networks. London: Brixton Community
Sanctuary, Pavilion Publishing and Mind
On Our Own Terms 2003 Table
says: "1995-present Service users/survivors as workers:
Employment campaigns and programmes are developed by service users,
in Nottingham, and service user employment programme to
support service users to find work within the South West London and St
George's NHS Trust."
Internet: "The only way I knew there was any survivors activism was
by finding the
online Madness list in the US in 1996. There were only 3 of us
from the UK on the list and I kept wishing we had a UK movement like them.
I didn't know about you guys. So historically speaking
the internet has made a big change in the ways we can
1996 The Avon Mental Health Measure, The Avon Mental Health
Bristol, published by Mind. "A measure designed to enable users of
mental health services to have a structured voice within the process of
their care to help identify needs and priorities. A service user-centred
approach to assessing need... a comprehensive, valid measure for drawing
up care plans, based on identified needs. It helps engage service users in
the management of their care. The assessment tool enables service
users to examine various aspects of their lives, resulting in a holistic
needs assessment which, when used over time, can be used as a proxy
measure of outcome." Vicky
"it was South West
Mind (Earle Kessler and Alison Cox are names I remember) who led on it
rather than user groups, although the steering group had people from
Bristol survivors patients council on it as well as commissioner's and
providers council and mental health care trust (before AWP) existed
services were provided by 3 acute non mental health trusts across Bristol
and this one was in United Bristol Health Care Trust patch mainly" Glen
In 1996 Peter Relton became
Service User Development Worker with the new "Bradford
Treatment Service". He says he was "the first service user in the UK
employed to provide a user perspective within a team of mental heath
professionals". He also speaks of "post-psychiatry, which has its origins
in the work pioneered by the Bradford Home Treatment Service."
"We have been a pioneering and
radical group since 1996" (Denise Mckenna).
Pete Shaughnessy one of Southwark Mind's
original user members and was its first chair. Denise Mckenna joined
acouple of months later in 1996 and they became co-chairs.
Southwark Mind had been almost user led
for about a year before the 1997 AGM - with the enabling help of Anna
Carver of the Independent Advocacy Service -
and we had all been working towards it becoming fully user led for some
time. There was no opposition to it becoming user led. (Denise Mckenna)
Besides being involved in Southwark Mind, Pete was involved in many other
user activities, some of which involved users from Southwark Mind, but many
were distinct from Southwark Mind. (Denise Mckenna) See
24.8.1997 Southwark Mind AGM that converted it into a user run
[The following is misleading in at least two respects: Pete Shaughnessy,
with the help of Denise Mckenna, "carved up" the 1997 Annual General
Meeting of Southwark Mind, turning it into a user-lead charity. This led to
Robert Dellar being
appointed as a development worker "to take ideas forward including Pete's"
And the World Really Had Changed (ISBN: 1901045005)
published by Leeds Survivor Poets. LSP Press, Leeds, 1996.
25 Cms x 18 Cms. 135 pages, 99 poems written by members of The Leeds
Survivors' Poetry group, who describe themselves as survivors of "mental
health system involvement". The poetry varies from humorous to touching to
painful, and is the first anthology by this group.
Sharon Lefevre, Killing me Softly. Self harm, survival not suicide
Handsell Publishing, 1996. 95 pages. ISBN: 1903199069
1996 Perspectives on Manic Depression - A Survey of the
Fellowship, by Robert Gareth Hill, Pollyanna Hardy and Geoff
The Sainsbury Centre for Mental Health, -
external download -
offline - The most recent leaflet was one on
the self-management of manic-depression. This concept was picked up by the
Voices. See also
Mary Nettle February 2000.
about 1996 that Tina Coldham walked out of her psychiatrist's room
thinking "Is this all there is?" A local charity helped her set up and run
a self-help group, which she did for eight years. About 1999 she began
working as a Mental Health User Consultant/Trainer. She coordinated user
evaluations of a city centre day centre (2000), mental health day services
in the rural areas of South Winchester, and a hybrid service (CAB,
Advocacy, Housing, and legal advice) in an inpatient setting (2001). She
was elected to the
Mind Link National Advisory
Panel in 2003 and is vice-chair of the
National Survivor User Network
1996 [Daniel] Kofi Sunu became Head of Supported Housing and Care
Services, Kush Housing Association, Hackney. About 1997 Kush Housing
established the Nile Centre, a mental health crisis centre for people of
African and Afro-Caribbean origin, living in Hackney. This aim to reduce
the number admitted to hospital as schizophrenic.
[BBC link]. About ten years later, Kofi Sunu helped to start
Aya or fern is a symbol of endurance and resourcefulness. In 1996,
Hammersmith and Fulham Black User Group (Hand f Bugs) chose this symbol
"because we thought it was apt for the experience of the members of the
See 2000 -
Tower Hamlets African and Caribbean Mental Health Organisation (THACMHO)
was established in 1996. Its projects include "The Health Through
Initiative". One of its symbols is Tabono representing strength, confidence
perseverence. Another is the Sankofa bird that flys forward while looking
backward with an egg in its mouth. The egg symbolizes the future. We must
go back and reclaim our past so we can move forward; so we understand why
and how we came to be who we are today.
1996 Black Women's Mental Health Project set up: "Two women - Mary
Ampah and Hyacinth Dapaa - set up the group. They registered the name as a
company. All they had, when I joined them in 1996, was one community room
in Stonebridge, which they were given, plus four chairs which they provided
themselves." - [Currently] "We are at Park Royal Business Centre in
Harlesden... We have proved over and over again that The Black Womens'
Mental Health Project is a beneficial, valuable addition to community
welfare in Brent."
(Angela Linton-Abulu contact person March 2003) -
Brian Hartnett returned home to Limerick, where a doctor
diagnosed him as schizophrenic. "For the first time ever I realised that
everything going on in my head could possibly be attributed to an illness
and that this illness might be treatable". "When he said he could prescribe
medication that would stop this nightmare, a glimmer of hope appeared on
the horizon. I was worried though about what this drug, would do to me.
Would it turn me into a vegetable, would I be sedated to a state of
numbness. He reassured me by saying it was a relatively new drug and that
it was the best thing for me. He mentioned hospital saying I could go there
but I agreed to be treated as an out patient under my parents supervision.
He also gave me a prescription for side effects." "The effect of the
medication was to subdue the voices and delusions to a state where I could
function to a relatively normal degree, but I found that I also had to be
careful to avoid stressful situations. I had to eat, sleep and exercise on
a regular basis. I also had to take the medication twice a day every day.
If I didn't look after myself in this way the voices and delusions would
rise up and start to interfere in my life again."
"Some Points to Consider when Putting your Crisis Card into Use" Survivors
Speak Out Information sheet.
(Anne Plumb collection).
The UK Federation of Smaller Mental Health Agencies -
"Representing the Unrepresented"
formed as a result of a Forum organised by
Matthew Trust in the House of Lords in February 1996.
Founder and President
120 representatives of 86 agencies attended and agreed that the Federation
should be formed. As many again wrote in with support after that meeting.
The Federation is a Company limited by Guarantee (number 3236769). It is
a membership-based Charity (number 1058342) set up to support its locally
based and independent Members who develop and provide mental health
services in their community. At its peak it had 250 voting and associate
members, representing more than 150,000 service users.
. Not updated since November 2005 but the
Federation may still be active. The Trust Deed of
The O'Hara Trust (On the Side)
, a family charity which supports
the Federation, is dated 21.3.1997. "On The Side is a charity which mainly
supports the efforts of small user-led mental health groups."
March 1996 Pembrokeshire Hearing Voices Group (Grwp Clywed Lleisiau
Sir Benfro formed. Between April 1998 and March 2000 the group produced
a monthly newsletter (edited by Hywel Davies). These were later bound as
Hearing and Belonging. The Newsletter Pack 2000. Hywel also produced
Hearing Voices: An Information Pack in 1998 and the Mental Health
Factfile (Ffeil Ffeithiau Iechyd Meddwl).
Gobbing, Pogoing and Gratuitous Bad Language!: An Anthology of Punk
Short Stories published by Spare Change Books.
4.4.1996 Launch of Brixton Community Sanctuary Anthology, by
Survivors Poetry at
June 1996 Highland Users Group (HUG) established.
Summer? 1996 Press launch of
Who's Hurting Who? Young people, self-harm and suicide.
"During that launch, a story was touted around the tabloid press with the
headline 'voluntary sector encourages people to self harm', and a
psychiatrist, on local television, indicated that we were out of our depth.
Following this publicity, we also learnt that some services mistakenly
believed that 42nd Street had 'cutting rooms.' Accepting that self harm may
be 'functional' for some young people at particular times in their lives
did not mean that we actively endorsed or encouraged self harm, nor
provided places where young people could 'cut up'. Despite these
misunderstandings and attempts to undermine our work, we knew from our
experience that young people responded positively to a less controlling
approach." (42nd Street Forward to
Spandler and Warner 2007)
October 1996 launch of the Millennium Awards scheme by the
Millennium Commission. The Millennium Commission was set up under the
National Lottery Act of 1993. It met between February 1994 and November
2006. Millennium Awards were small (typically about £2000) grants to
individual people for projects which benefited themselves and their
community. They were administered by charities, including Mind. Mind
Millennium Awards made 514 awards from a total grant of £1,011,629 -
See weblink. Awards made included to
Pegler - Andrew Hughes -
10.10.1996 Sweet, Sour and Serious: illustrated anthology
Glasgow: Survivors' Press Scotland, 1996. 136 pages. 22 cm.
Includes portraits. Includes indexes. ISBN: 095291400X. Launched on World
Mental Health Day, which was also National Poetry Day.
COPAC lists two copies: One in the National Library of Scotland
and the other in Bristol.
15.11.1996 and 16.11.1996 Seventh? Eighth? National
Hearing Voices Conference. Who Owns Voices, Who Owns
Psychosis. Language in Crisis. Birmingham. Hearing Voices Network in
Action Consultancy and Training. Speakers included Phil Barker,
Richard Bentall, Lisa Blackman, Thomas Bock,
Ron Coleman, Jenny Day,
Sondra Escher, Gill
Haddock, Sharon Le
Loren Mosher, Ian Parker, Eoro Riikonen,
Marius Romme, S P Sashideran, Tholene Sodi, Phil Thomas, Sara
1997 is remembered for iconic collaborations and conflicts in survivor
culture which continue to provide foci for debate. The year began
peacefully with a lottery grant to "document and disseminate people's
strategies for living with mental health problems". This helped fund the
conferences from March 1998. Collaborative events coinciding with the 750th
anniversary of Bethlem included
The Bethlem Gallery "for artists who have
experienced mental health problems" and
Beyond Bedlam: Poems written out of Mental Distress. But
the celebrations also engendered cultural conflict in the
Reclaim Bedlam campaign,
eventually leading to Mad Pride. Reflecting on these events, Peter
(Summer 1998) "If
mental health service users/survivors are to take charge of our future,
then we must also regain control of our past"
Nick Crossley's research on mental health movements probably
began in 1996 or 1997. He was at
Sheffield at the time (Contesting Psychiatry p.9).
Peter Campbell was interviewed in 1997. Nick contacted
in 1996 or 1997 to ask about her knowledge of the local and national
movements, including the survivor/patients movement. She lent him some of
the material she had collected over the years, including material that
Andrew Roberts and
Clive Perrett had copied for her on the MPU and SPK. She also gave him a
few local contacts in Manchester and details of other national figures -
including Andrew Roberts. (email 2.10.2012). Nick interviewed Andrew on
Mary Nettle appointed a
Mental Health Act Commissioner (since 2009 part of
Care Quality Commission). "My role is visiting psychiatric units
to ensure the rights of patients, detained under the 1983 Mental Health Act
(amended 2007), are observed." -
"Ms M. Nettle" is one of the eleven "Lay Visit Members" 1997-
1999 listed in the
Mental Health Act Commission's eighth biennial report.
Kathryn Church: Because of where we've been : the business behind the
business of psychiatric survivor economic development published
Toronto?. 40 pages. "Written for the Ontario Council of Alternative
Business in partnership with 761 Community Development Corporation."
On Our Own Terms 2003 Table
says: "1997-present Service user/survivor-led innovations for self-managing
mental health problems are
developed by service users/survivors: Service user/survivor-led crisis
projects emerge in Devon, Brighton, Birmingham, London,
Wokingham, Corby, Leeds and elsewhere.
Advance directives are developed as
ensuring choice of treatment in crisis.
Manic Depression Fellowship
self management programme. The
Strategies for Living project runs annual 'Big Alternative'
[from March 1998] which become the focus for service
The Afiya Trust was established as a charity in 1997
INTERVOICE, the International Network for Training, Educcation
and Research into
Hearing Voices, was established 1n 1997.
1997 Skallagrigg House opened in Birmingham, with funding from the
Mental Health Foundation's crisis programme. Later, in diferrent premises,
it was called Anam Cara (Celtic for 'soul friend').
A crisis house run by "C.H.A.N.G.E." to provide an alternatives to
acute hospital inpatient admission. All staff had experienced their own
mental health crises. Only staffed during the day (weekdays) and limited
support at weekends. Piers Allott is described as the "main developer".
Knowing Our Own Minds -
Users Views of Alternative and Complementary Treatments in Mental
Mental Health Foundation
Why do you think Knowing Our Own Minds was important?
"The Foundation was making a transition away from being a committee-led
organisation funding doctors, so it was a way of trying to change the
emphasis and say: "It's all very well what research says about what's
effective but what do we find helpful, what do we think about these
different treatments and therapies?" There wasn't much research asking
people their opinions about services and treatments. I think it was ground
breaking because it really was designed by us."
"The Strategies for Living research
project followed on from the
Knowing our own Minds survey by investigating
in greater depth the key issues raised by the survey, through
face-to-face interviews with 71 people." [source?]
How did the Strategies for Living program follow-on...?
"Our aim was to document and disseminate people's own ways and strategies
for managing mental distress, primarily through user-led research. The core
piece of work was the Strategies for Living report, but we also then
invited applications from service users to do their own research. I think
that was the most innovative and exciting part, because we were
giving people training in skills and understanding research. I think it had
a huge impact." (Alison Faulkner 2.2009)
In 1997 the National Lottery Charities Board made a grant to the Mental
Health Foundation for a three year programme of work led by service users,
to "document and disseminate people's strategies for living with mental
May 1997 Steering group established with members from
UK Advocacy Network - the
Manic Depression Fellowship -
Depression Alliance -
African-Caribbean Users Forum -
Mind Link - and the
Scottish Users Network.
September 1997 Jim Green's report on consultations with users groups
in England, Wales, Scotland and Northern Irelend.
Jan Wallcraft's report on published and unpublished work on the
role of alternative and complementary therapies in mental health.
First newsletter. Jan Wallcraft appointed researcher for the
strategies for living project.
"Since 1997 the Mental Health Foundation has played a key role in
supporting and promoting user/survivor-led research in the mental health
field across the UK through its Strategies for Living initiative." Phase
one of the initiative ran from 1997 to
2000 and phase two from 2000 to
(Mental Health Foundation, November 2003))
"The Survivor Researcher Network began as part of the work of the
Strategies for Living
project hosted by the Mental Health
(confirm with Alison Faulkner) in the very late 1990s. S4L no longer
exists but the SRN continues to be supported by the MHF who provide a
room and travelling/subsistence expenses and administrative support."
(David Armes, email 1.8.2008) - See
- website 29.9.2002: "Research
Newsletter of the 'Research Support Network', part of the
'Strategies for Living' programme from the Mental Health Foundation. The
Research Support Network aims to encourage people with experience of mental
health problems to find out more about what helps them."
Website established July 2009 with this text: Survivor
Researcher Network (SRN) The SRN is an informal network of people who
have experience of mental health problems or emotional distress. They are
interested in sharing thier experiences as researchers in the mental health
field. Feel free to join if you are a service user or survivor doing
research. They meet up in London every quarter. Reasonable travel expenses
will be paid. Also, some of the SRN members have been involved with the
production of the book
This is Survivor Research ISBN 978 1 906254 14 8.
Survivor Researcher Network, c/o Mental Health Foundation, 9th Floor, Sea
Containers House, 20 Upper Ground, London, SE1 9QB.
Coverage of Organisation National
Veronica Dewan appointed by West Sussex Social Services to set
up a Users as Trainers' Project as a training project for people in
West Sussex who use mental health services. This became the
Capital Project Trust in
contact details). CAPITAL
stands for "Clients and Professionals in Training and Learning".
In August 2005 it had just under 100 members, many of whom work as
delivering service user focused training or are involved in consultancy and
Clare Ockwell, one of
its founders, is an active member of the
Service Users History Group, as is its ex-Director,
May 1997 "The North West Right to Refuse Electroshock Campaign was
formed following a packed public meeting organised by
Psychology Politics Resistance in May 1997 at
Hall. The founding meeting heard members of
ECT Anonymous describe the
effects of this `treatment'"
Summer and Autumn 1997
Reclaim Bedlam campaign (protest against the
celebration of Royal
Bethlehem Hospital anniversary), eventually leading to formation of
Mad Pride, a group that organises demonstrations and
celebrations of 'mad
culture'. (On Our Own Terms
4) - but incorrectly given as 1999
750th anniversary celebrations of
These were publicised
in March (Probably earlier).
Pete Shaughnessy (Evening Standard Magazine
17.3.2000) "I was involved in the Maudsley at the time. They
came and talked to us, as an afterthought, and said we'll have a "Users'
the third day. I thought that was really token, that we were
on at the end of this really naff event. And then they said we're having a
Thanksgiving Service at St Paul's, and I think that's probably when I
snapped. We called that a Commemoration, for the people who have died and
the sadness they've lived in."
Pete Shaughnessy and
colleagues in Southwark Mind countered the idea of "celebration" with that
of "commemoration" in what he later described as a "battle with the
Maudsley PR machine". "We spoke at Reclaim the Streets and political
events. We gatecrashed conferences... I know we pissed users of with our
A picket of the staff ball and following "Fun Day" (Family Spectacular) was
planned. However, when Pete heard that users were willing to cross the
picket line in order to run a stall at the Family Spectacular - "I lost my
nut, which meant I threatened to bring Reclaim the Streets down to smash up
their stall." The police were called and the pickets had to be called off.
Friday 21.6.1997 Staff Summer Ball at Bethlem
Family Spectacular "An open afternoon at Bethlem"
Sunday 23.6.1997 Proposed third day to be devoted to users? (see
"The first events were ... a rally and march from the Imperial War Museum
to the Maudsley in Camberwell; and a picket of the service at St Paul's,
which involved a minute's silence on the steps outside". (Pete Shaughnessy
"We had our first picnic at the
Imperial War Museum... Simon Hughes MP came and spoke. There
were features in the Big Issue and Nursing Times, and we were
next event was to screw up the the thanksgiving service at St Paul's
Mad Pride (2000) page 22)
Monday 21.7.1997 "Happy Birthday Bedlam?" The Big Issue
Wednesday 23.7.1997 "Two sides to every story" Nursing Times
Southwark Mind AGM
Thursday 23.10.1997 Service of Thanksgiving at St Paul's
Sunday 31.8.1997 Although nothing appears to happened in the world
for 24 hours except the death of Diana Princess of Wales, in fact many
dependent people suffered neglect as staff watched television.
September 1997 Issue one of The Camden Bugle - Monthly Newsletter
Camden Mental Health Consortium
September 1997 Doing Disability Research, edited by
Colin Barnes and Geoff Mercer, published by The Disability Press, Leeds.
Available online. See chapter five
Psychiatric System Survivors and Emancipatory research: Issues, overlaps
and differences by
Peter Beresford and
Jan Wallcraft - (
Strategies for Living Newsletter
Volume 1 Issue 1.
[Issue 2 January 1998 -
[Issue 3 March 1998 -
October 1997 Formal constitution? of Advocacy France. "Un mode de
participation active des usagers en
santé mentale" (a way of active participation by
users of mental health services)- The association started in 1996 -
Beyond Bedlam: Poems written out of Mental Distress, Anvil Press (in
conjunction with Bethlem and Maudsley - the Mental Health Foundation - Mind
- Survivors Poetry
Beyond Bedlam consists of a mixture of general survivors' poetry,
work by famous poets who had experienced mental distress, such as John
Clare and T S Eliot, and work by living poets who might not be known to the
public as survivors.
15.11.1997 Survivors Poetry launch of Beyond Bedlam with
poets from the new anthology. (Hampden Community Centre)
(Chronology of Disability Arts.
Joe Bidder states that,
It did away with a taboo in the literary world. All
these famous poets saying, "I've been in the bin too."'A first print run of
5,000 copies sold out within five months. 'The book had favourable reviews
in every single broadsheet paper. It was a transforming moment.
other launches "the book was launched at a celebratory reading at the
Museum of London followed by readings in other parts of the country" (source)
"The anthology Beyond Bedlam came about because the
Maudsley who were holding the celebrations gave Survivors Poetry
(Frank Bangay 14.7.2009)
November? 1997 Eighth? National
Hearing Voices Conference.
The Hurt Yourself Less Workbook
by Eleanor Dace,
Alison Faulkner, M. Frost, K. Parker,
Louise Pembroke and
A. Smith. 79 leaves, single-sided: illustrated; 32 cm.
(ring binder) ISBN: 0953402703
Published by the
National Self-Harm Network London: 1998. Includes
bibliographical references. This was the first
self-management workbook written by survivors for survivors.
COPAC lists copies in four libraries, but not the British
Library. It was sold at £12.50.
review) - Download a
In 1998 North and West Belfast Health and Social Services Trust set up user
and carer groups to assist in the development of mental health services.
The user group evolved into L.A.M.P. (Life After Mental health
Problems). L.A.M.P. aims to provide support and advice to users of
mental health services.
L.A.M.P.'s office 3 Rosemary Street, Belfast (028 90 242982) opened in 2001
and is staffed by volunteers from the group.
L.A.M.P. also organise a weekly ward round in the Mater
Hospital in Belfast where Advocates can be accessed on the wards.
footsteps was set up by four local artists in Ealing, west London in 1998
January 1998 Nick Crossley in London (12th to 16th) researching the
survivors' movement. Wednesday 14.1.1998 (morning): Interview with Andrew
Roberts at Andrew's home.
Interview 2. [Note that
(Interview 9) was
interviewed in 1997.]
February 1998 Getting Ready for User-Focused Monitoring (UFM) - A
Guide for mental Health Service Providers, Users and Purchasers
Sainsbury Centre for Mental Health. A Workbook compiled by Libby
Gawaith (Quality Assurance Project) - Diana Rose (Coordinator, User Focused
Monitoring Project) - Peter Lindley (Training and Practice Development
Section) - Gabriel MacKintosh (User Focused Monitoring Project) - Richard
Ford - (Head of Service Evaluation). "The cost of a two year licence, which
includes the right to use questionnaire materials and inspection visit
workbooks, as well as one training visit from The Sainsbury Centre is
Tuesday 10.2.1998 [First]
National Voices Forum Conference on
Schizophrenia, Birmingham. -
see box -
External link to report. There were five conferences focussing
on personal methods of coping with mental illness/distress and its
associated problems. See
Shaughnessy was interviewed by Fergus Walsh for BBC1's News at One.
Others taking part in a "media blitz" were
Roberta Graley, Gloria
Brown (Brent User Group), Pat Butterfield (ECT Anonymous) and
(Survivors Speak Out)
March 1998 First Big Alternative Conference organised by
Strategies for Living. "to celebrate the
credibility of service user involvement in services, and demonstrate that
that mental health services can be different"
(Newsletter October 1997)
2.3.1998 to 5.6.1998 Phase two training for first recruits to
Users to Trainers' Project. Name changed to
Capital Project Trust
Seaton Point, a novel by
Ted Curtis, Martin
Cooper, Rob Colson, Lucy Williams, Mally Mallinson and Emma McElwee,
published by Spare Change Books.
Anselm Lionel-Rajah appointed "Service User Involvement Worker" at
MACA (the Mental After Care Association). Responsible for
delivering MACA's "service user involvement strategy": Visiting service
users, finding out how people wanted to be involved in the decision making
process. Devised and lead his own training course called the Service User
Involvement Workshop. Coordinated a central service user group, producing
newsletters and minutes. An advocate for service users at management
meetings. Liased with other statutory and voluntary agencies. (Information
from Linkedin 3.7.2012). To June 2005 (6 years 10 months). See
Service User Involvement Directorate
September/October 1998 Survivor's Poetry
(downloadable pdf) - This
became Poetry Express.
10.9.1998 and 11.9.1998 International Conference to mark ten
years of the
Hearing Voices Network held in Birmingham. Organised by
Strategies for Living Newsletter Volume 2 Issue 2.
Strategies for Living
Newsletter Volume 2 Issue 2.
Reclaim Bedlam -
and the All Wales Users and Survivor Network target the "Changing Minds"
campaign as a "smokescreen to let them get away with compulsory treatment
orders" (Pete Shaughnessy) -
Saturday 31 October 1998 Rocky Bennett (David Bennett), a 38-year-
old Black man, was certified dead in the early hours. He had been a
detained patient in the Norvic Clinic, an NHS medium secure unit in
Norwich, for three years.
His death followed an incident involving the use of restraint.
November 1998 Two day conference in Birmingham leading to the
setting up of the
National Advocacy Network
Autumn 1998 Mysterious notices all around the Maudsley
Hospital warn that the tiger is coming.
17.12.1998 let the tiger roar... First official meeting of SIMBA
(Share In Maudsley Black Action), the Black Patient/User/Survivor group in
Maudsley Hospital, held in the Visitor and
User Centre at the Maudsley.
The tiger continues roaring:
October 1999 -
August 2000 -
"goes public" at Big Alternative Conference) -
Autumn 2001 -
October 2002 -
March 2004 -
March 2005 -
1998 PACE service user/survivor-led report on gays'/lesbians'/bisexuals'
experiences of mental health services. (On Our Own Terms 2003 Table 4)
Louis Pembroke organised the first to risk reduction conferences
for survivors. One of the outcomes of these was the publication of
Cutting the Risk
[NSHN 1999], the first and only book on practical
harm-minimisation for self-harm. - Download a
Nick Crossley (1999) "Fish, field, habitus and madness: the
mental health users' movement." British Journal of Sociology 50, 4,
Peter Campbell, (1999) "The Service User/Survivor Movement" In C. Newnes,
C, G. Holmes, C. Dunn (editors) This is Madness: A Critical Look at The
Future of Mental Health Services. Ross on Wye, Herefordshire: PCCS
M. Crawford and A. S. Kessel (1999) "Not listening to patients - the use
and misuse of patient satisfaction studies". International Journal of
Social Psychiatry, volume 45, pages 1-6.
social worker, Bernadette, (to whom she dedicated Poppy Shakespeare)
provided encouragement. In 1999 Clare applied for and was accepted on to an
MA course in creative writing at the University of East Anglia.
Daily Mail interview 4.3.2008
1999 First date on chronology of the National Disability Arts
Collection and Archive
"The Story So Far"
January 1999 First meeting of the "Critical Psychiatry Network" (The
'Bradford' group of psychiatrists), many of whose members have taken an
interest in the user/survivor movement.
Link to its website - See
Asylum 1999 -
Internet archive of Kirsti Reeves' Resources and Information for
People who self-injure. Internal evidence suggests Kirsti may have begun
her site on 23.11.1997.
Patient advocacy Council Report CR74 from the
Royal College of Psychiatrists, London.
offline. Membership of the Working Party:
Philip Graham (Chair) -
Edna Conlan, United Kingdom Advocacy Network (UKAN)
- Brian McGinnis, MENCAP - Victoria Thomas, Royal College of Psychiatrists'
Research Unit - Christina Young, UKAN.
Working Party administered by: Ms Deborah Hart, Royal College of
Psychiatrists. This was a review of the
1989 policy - See
9.3.1999 to 19.3.1999 Survivors' Poetry
"Fresher than Green,
Brighter than Orange". An exhibition of poems by Irish women at
Fresher than Green, Brighter than Orange- an anthology of poetry by
Irish women living in London in 1999, edited by
Eamer O'Keeffe and
Lisa Boardman was published by Survivors Poetry Press. The writers were
Eamer O'Keeffe - Ann Rossiter - Carolyn O'Connell - Kathleen O'Sullivan -
Siúbhan McNally - Ann Dalton - Julie McNamara - Roismáire
McGill - Anne Ireton - Carolyn O'Connell
Reclaim Bedlam march on
External link "Over one hundred user/survivors of the mental
health system gathered.. at the Royal London Hospital in Whitechapel and
marched to the headquarters of the office of SANE nearby. Under the
campaigning banner, this was the first of a number of actions planned to
fight the Government's proposals to introduce new legislation set to
contain compulsory treatment (drugs) for people living in the community."
14.3.1999 and 15.3.1999. Second
Big Alternative Conference organised by
Strategies for Living. "Rabbi Julia Neuberger
will introduce the second day, which we hope will attract more
professionals this year, as we are keen to start spreading our messages to
a wider audience"
(Newsletter October 1998)
Naked Songs and Rhythms of Hope "An illustrated collection of poems
from 1974 to 1999 by
Frank Bangay" "Launched at Mad Pride Benefits in June and at the
Union Chapel, Compton Ave, London N1 at 8pm on Saturday 11th
"first ever gig" -
archive index) -
"Frank Bangay, veteran of Campaign Aganst Psychiatric Oppression and
survivor poet read from his latest book"
The Mad Pride gig (20.6.1999) was held at the Foundry in Old Street,
Shoreditch. The Mad Pride
begins 4.11.1999 - Last updated 22.9.1999. A website established earlier
Peter Shaughnessy at
appears to be lost
1999 Recovery: an alien concept by
Ron Coleman. Gloucester: Handsell. 116 pages. See
September 1999 Birmingham Conference "Recovery. An Alien Concept"
organised by Handsell
Publishing. This was the second Annual Conference of Handsell
Publishing. The speakers list included
Loren Mosher (USA), Phil Barker,
Michaela Amering (Austria),
Ron Coleman, Phil Thomas,
Sondra Escher, Steve Crane,
Lucy Johnstone, Ian Parker,
McLaughlin, Fran Silverti (USA), Mike Smith, Andy Gilbert,
Errol Francis. The speakers' list reflected the interest of a variety of
professionals in this "process of recovery from severe and enduring
mental health problems".
Department of Health, London, A National Service Framework for
"The National Service Framework for Mental Health is an attempt
to set national standards for services for people of working age who
experience mental illness. Service users were
involved in setting these standards and the document identifies service
users as key players in the development and evaluation of health care.
Specifically, the document states that:
a) Service users need to be involved in developing services in order to
make them more acceptable and culturally sensitive.
b) Performance of psychiatric services needs to be assessed at a national
and local level by the experience of users and carers including those from
Black and ethnic minority groups.
c) Service users and carers should be involved in planning, providing and
evaluating training for all health care professionals."
(Mike Crawford, March 2001)
November 1999 Green Paper:
Reform of the Mental Health Act 1983.
Proposals for consultation (1999). London: The Stationery
National Voices Forum Conference on Self-Management of Schizophrenia,
External link to report.
October 1999 Issue one of The Voice of
SIMBA: let the tiger
roar... "The Newsletter of SIMBA (Share In Maudsley Black Action), the
Black Patient/User/Survivor group in the Maudsley Hospital"
Martha McCleeland - Paddy
and others "came together and
thought about how we were going to develop the process of peer advocacy on
an island wide basis." They decided on a conference and. in preparation,
Paddy Masterson and Paddy
McGowan "travelled the country on a two-week basis calling with health
boards all across the Republic of Ireland. Talking with survivors, talking
to health board staff and mental health employees."
The Irish Advocacy Network (IAN) was formed from the first user run user
led conference in Derry in November 1999, a three day conference,
"VOICES", organized by Mind
Yourself in Derry, Northern Ireland. Gave "service users a
collective voice for the first time". Approximately 270 people attended,
mostly mental health service users (survivors). Survivors met alone for the
first two days of the conference, allowing people "time and space to tell
their own stories".
"The Steering Committee was elected democratically for the conference, a
management committee of 12 individuals, 6 from the north, 6 from the south,
7 women and 5 men. Out of that beginning the Network was born."
The Irish Advocacy Network was
formed at the conference
Paddy McGowan was elected chair of the network.
For three years it was
"about getting out there, meeting the people, talking to survivors..." "we
had no understanding of where we were going to draw finances from." See
September 2002 -
December 2002 -
"Since 2000, Rethink has worked collaboratively with the Institute of
Psychiatry, King's College London to deliver anti-discrimination training
to professional audiences. People with experience of
mental illness deliver the training alongside Rethink staff."
Graham Estop was
the National Voices Forum's worker from 2000 to 2004.
During 2001 and 2002 I received numerous flyers on "Victim to
Victor workshops" being run by
Action Consultancy and Training.
(probably in with
Hearing Voices Network. It was BIG business. Conferences were
held on Working with Voices, Working to Recovery, Working with People
diagnosed as having a personaility Disorder, Working with Self-harm,
Working through Sexual Abuse, Suicide Risk & Management, PATH (Planning
Alternative Tomorrows with Hope), Person Centred Planning and Tools for
Change. Conferences were held in London, Cardiff, Gloucester,Manchester,
Leicester, Hull,Leeds, Gloucester, Liverpool, Southhampton, Sheffield,
Dundee, Edinburgh, Glasgow, Exeter...!!. (Anne Plumb email 3.9.2009)
Taking Over the Asylum - Empowerment and Mental Health by
Marian Barnes and Ric Bowl.
(external link) -
Terence McLaughlin's PhD thesis Psychology and mental health
politics: A critical history of the
Manchester Metropolitan University was
examined by Marius
Romme in 2000
Pathways, Barriers and Aspirations: The Mental Health System in
Birmingham from a Service User Perspective was commissioned from
2000 Local Authority Health Overview and Scrutiny Committees (OSCs) were
established following the Local Government Act 2000
Tower Hamlets African and Caribbean Mental Health Organisation
(THACMHO) decided to formally establish itself as a voluntary
Alison Faulkner and Sarah Layzell
Strategies for Living: A
Report of User-led Research into People's Strategies for Living with Mental
Distress, Mental Health
Jeff Walker: "in
January 2000 I was actually admitted to a psychiatric unit suffering from
very severe acute and chronic depression. I was in hospital for about three
weeks then I was ill at home for about another six months, I had another
hospital admission, was ill at home again and then in
7.1.2000 Yahoo group
UKSurvivors founded by Mark Roberts as "Survivors watching UK
Mental Health Act"
"UKsurvivors came along in a New Labour Mental Health 'Horizon' period ..
Hope was all. No-one can divorce UKsurvivors from the disappointing
politics of the times in which it has been constructed and formed by its
posters. Instead of serious meaningful reform, from 2000 to 2009, which
positively touched individuals lives, the system is still failing many."
"Harry H. Towers" on UKsurvivors 16.7.2009
Little Wing, Dundee,
Mary Nettle wrote her story for the SUN website. She was, at
this time, "among many
chair of Mindlink ... a
Mental Health Act Commissioner". She said that she had learnt
manage her illness by listening to colleagues in the user
feel valued and hope that in a small way I am enabling others to gain the
benefits of speaking up and speaking out. It feels good to have turned a
negative into a positive".
23.2.2000 Debate: "Policing the Mind: is compulsory community
treatment ever justified?" Topic discussed by Tom Burns, a member of the
Royal College of Psychiatry's 1993
Community Treatment Order working party
- Cliff Prior, Chief Executive of the
National Schizophrenia Fellowship
whose "largest ever survey of user and carer views on mental health law"
led to the "Better Act Now! campaign" - Frank Holloway, who "has a long-
standing interest in the history and social policy of community care" -
Peter Campbell, "a Mental Health System Survivor and has been sectioned
many times. Since 1980 he has been involved in service users' campaigns to
improve the position of people with a mental illness." Debate chaired by
George Szmukler, the Medical Director at the Maudsley Hospital - See
See May 2000 document
2.3.2000 Meeting of Survivor Groups at Friends House - Led to
Statement on the Mental Health Green Paper by Meeting of National Mental
Health User/Survivor Groups. 23.3.2000 Organisations
represented at the meeting:
Cymrar (Advocacy in Wales) - Ect-Anon - African Caribbean User/Survivor
Forum - National Voices Network - United Kingdom Advocacy Network -
All Wales User Network -
Manic Depression Fellowship - Mad Pride -
Reclaim Bedlam - Association of Survivor Workers. Not present, but
supporting the statement: Survivors Speak Out and National Self Harm
Friday 17.3.2000 Article
"Talking Sense" by Matt Seaton in Evening Standard
Magazine "Sick of being ghettoised as knife-weilding loners, London's
mentally ill are proclaiming their innocence and taking to the streets in
the most radical protest since the sixties civil rights movement. On the
eve of their mass lobby of Parliament Matt Seaton talks to some of the
activists who are proud to be mad"
[Archives from 3.10.2000)
Premila Trivedi (left) - Paulette and her children, Shanice and
Aaron - and
(back row) Linden Falkener, Gary and Lionel. SIMBA was the "most exciting
useful" thing that had happened to Premila over the past year. She thought
of "transparencies, statistics and charts", but the group thought it would
be "so much more powerful to do it through prose and poetry"
This was the first public appearance. They performed on Ward ES3 on
1.5.2000 and later to the Board of the South London and Maudsley NHS Trust
31.3.2000 End of consultation on the
Green Paper on a new Mental
East Lothian Involvement Group ("Our voice on mental health
services") became an independent
group on 1.4.2000. With funding from Disability Scotland it acquired
computer equipment and internet access and
established a website.
The website was established after 1.4.2000 and before Thursday 2.11.2000
when ELIG had a Bonfire Night/Fireworks celebration from 6:30pm. The
ELIG Annual General Meeting was held on Wednesday 20 December 2000. The
website probably remained unaltered from 2000 to 16.4.2004 when it was
archived by the
international archive. It was still the same
on 22.11.2008 this website created a one page
copy of its content, without the overlaying advertisements of
the original Lycos site.
A new website was established in
14.4.2000 Meeting that set up what became Suresearch: a
network of Service Users in Research
and Education. - "We all left the first meeting thinking about
a possible name for the network and
Tony [Glynn] was the one who brought
Suresearch - to the second meeting and it was agreed." [email from
External link to
the Suresearch web, which was developed by Dee Partridge in
2006. In the autumn of 2009, Rachel Bentley began work on the important
arranging Suresearch records in a way that would make them
accessible. This was completed by the spring of 2010.
20.4.2000 Constitution of Edinburgh Users Forum.
See website - The address for EUF is c/o
July 2000 National Health Service Plan: -
(External link to download summary) -
(External link to download full plan)
"For many service users and carers, the NHS Plan
(2000) offered the first opportunity to play a key role in the design,
delivery, planning, monitoring
and evaluation of health services. A Patient and Public Involvement Forum
has been set up
for every NHS trust and primary care Trust in England, to allow local
people to play an active role
in decision making." (Mental Health and
Social Exclusion, June 2004, page 44)
July 2000 David Armes "Enablement and Exploitation: The
Contradictory Potential of Community Care Policy for Mental Health Service
Users". Unpublished Paper presented to the Social Policy Association 33rd
7.7.2000 "Biggest Mental Health Lobby Ever"
(Asylum 2000 volume 2)
mentions attempt to give statue of Winston Churchill a giant depot
Sch News front page "Mad for it" on Mental
Health Green Paper (Reform of the Mental Health Act) and Mad Pride festival
in Clissold Park July 15th, 1pm-9pm
August 2000 Issue two of The Voice of
SIMBA: let the tiger
15.8.2000 First archive of the
September 2000 Birmingham Conference "Moving Beyond Maintenance -
Making Recovery a Reality in Mental Health Services" organised by
Publishing. This was the third Annual Conference of Handsell
November 2000 The Hertfordshire Mind Network established
ViewPoint "to enable people who use mental health services to get
involved in the planning and delivery of these services". It had its first
Annual Meeting on 23.11.2004 -
1st National Conference of Survivor Workers -
by Rose Snow, Conference co-ordinator -
The Mechanics Institute, Manchester
28 February 2001
National Voices Forum and
Hearing Voices Network Conference on Self-Management of
External link to report. Possibly about here that Issue One of
Perceptions - The Magazine of the
National Voices Forum was issued.
An Article by Carol Jenkin, founder of
The user movement in England research, proposed autumn 2000, was
On Our Own Terms (summary The Mental
Service User Movement in England) in May and June 2003.
2.11.2000 Diana Rose
"The user movement in England. 2000. Position paper. background to proposed
research on the user movement", meant to be read as background
to a Research Proposal on the user movement in England which had been
Matt Muijen the Chief Executive of the
Sainsbury Centre for Mental Health. He provided the money for
the study. The position paper, although containing personal reflections,
was said to have "arguments ... based on shared experience, literature
written by members of the movement and preliminary discussions with the
contemporary chairpersons of two, rather different, local user groups in
"Diana Rose set up the project, including a
steering group of
some key figures in the user movement, before she left to set up SURE at
the Institute of Psychiatry." (Angela Sweeney)
The "User Survey Steering Group" members listed in
Diana Rose -
Andrew Hughes -
Jim Read -
Peter Campbell -
- Hilary Hawking -
Hanif Bobat - Rachel Perkins -
Jacqui Sealey -
Carol Jenkin - Dominic Makuvachuma Walker -
Diana Rose says "we got agreement from the Chief Executive of
the Steering Group, and not he, would have final
say over the content of the report. To me it is amazing that we got that
concession and it would not happen today. So my position paper was also
prescient - things have continued to move away from a user-led focus at
least in research". (email from Diana Rose
Anne Plumb was interviewed over the phone by Diana, in
connection with this research. This probably explains why Anne had a copy
of Diana's Position Paper - The only one we know of that survived. (email
from Anne Plumb 18.3.2010)
There was some overlap between the
User Survey Steering Group and the
research team for this project. The acknowledgments to
On Our Own Terms thanks (in order) the steering group - the
Sainsbury Centre (and its Services Research team) - individuals who were
interviewed etc - and concludes "The research team were: Jan Wallcraft and
(SCMH); Hilary Hawkin, Robert Jones, Andrew Hughes, Carol
Jenkin and Hanif Bobat (sessional interviewers and consultants on data
analysis). Carolyn Farr and Jennifer Findlay provided excellent
administrative support. Diana Rose originated the project, did the earlier
work to set it up and remained available for guidance throughout."
18.12.2000 Rosemary Moore (Surrey) launched
Mental Magazine UK
(a website) in memory of her mother Bettina
(archive). Site updates continued until 2003.
In England, the first years of the twenty first century were marked by a
major set back to the voluntary (unpaid) users' movement with the abolition
Community Health Councils, which had often provided a base and
for users. (See
This was accompanied, however, by statutory requirements for
user consultation and the establishment of a new structure of consultation.
It also saw the expansion of the structure for purchasing advice
from user groups. In New Zealand,
Mary O'Hagan was appointed as a Mental Health Commissioner. In
England, users carried out the most extensive survey of
"The user movement in
Mad Pride provided new
perceptions of the movement, presented in opposition to the growth of
involvement in establishment activities.
Adam James (2001), Raising our Voices: History of the Voice Hearing
Handsell, United Kingdom
Making a Scene, a service user led and managed drama group,
established in the Eastleigh/Southampton area.
External link to website.
Hackney Patients Council Report for the First Five Years
by Andy Martin, Lai Yuen Lung and Tariq Qathafi
Jeff Walker: "in
January 2001 I had a final
hospital admission where I was sent home well
again, I started to get a bit better then. My recovery started in about
January 2001 to the point where in June 2001 I started volunteering for
Bristol MIND." See Bristol
ECT Anon website. It remains essentially the same.
Present website. The people and locations cited are Keighley,
(Pat Butterfield?) - Una Parker, Pontefract, West Yorkshire and
J. Campbell, Sheffield. South Yorkshire.
Users' Voices -
The perspectives of mental health service users on community and hospital
Diana Rose. A review of the
Sainsbury Centre for Mental Health's work in
January 2001 Vicky Nicholls Doing Research Ourselves A Report
Strategies for Living Research Support
February 2001 Sharon Matthew Research Project into Users Groups
and Empowerment Supported by the
Strategies for Living Project - Mental Health
February 2001 Dale Ashman (in Cumbria) received a
MIND "Real Lives, Real People" Award, funded by the Millennium
Commission to establish Borderline UK as a national user-led network of
people with a Borderline Personality Disorder (BPD) diagnosis. Dale had
started Borderline UK in 2000 as a personal web site. - First
archive 8.3.2001 - Borderline UK adopted its
first formal constitution in 2003 -
Borderline Personaliy Disorder is a type of
Personality Disorder called Borderline because it was believed
to be on the
Borderline Personality Disorder leaflet.
28.2.2001 First UK Survivor Workers' conference held in
200 survivor workers
attend. Report written by Rose Snow
published in 2002. (On Our Own
Terms 2003 Table 4) -
Report in Asylum. Participants included
David Crepaz-Keay, Deputy Director Mental Health Media -
Angela Linton-Abulu, Chair Black Women's Mental Health Project -
Rachel Perkins, Clinical
Director Pathfinder Trust -
March 2001 Issue one of
aaina - a mental health advocacy newsletter - published in India
March 2001 "The role of users of psychiatric services in service
development - influence not power" by Peter Campbell, and "Involving users
in the development of psychiatric services - no longer an option" by
Mike Crawford published in the
Psychiatric Bulletin of the Royal College of Psychiatrists
Strategies for Living Newsletter Issue 12. Includes
"Simba roars - A personal perspective from
1.3.2001 Making Waves (Nottingham) website first archived.
First useful copy
2.2.2006. "Making Waves consists of people
with a range of experiences of mental distress. It was developed from a
project called Service Users Monitoring Service (SUMS), set up to deliver
User Focussed Monitoring in 2000, and became a not for profit limited
company in January 2003. Making Waves aims to use people's experiences to
transform mental health services, and develop new and innovative ways of
supporting people experiencing mental distress. The organisation has
extensive experience of providing service evaluation of mental health
services and contributing to the development and evaluation of courses
including those offered within the School of Nursing at Nottingham
University. Making Waves has moved on from simple UFM to be much more
engaged in research, and education and training."
14.3.2001 Fourth Big Alternative Conference organised by
Strategies for Living - London Voluntary
Sector Resource Centre, 356 Holloway Road, London N7 6PA.
National Voices Forum website first archived. First
recoverable copy of home page is isssue five, uploaded 26.7.2001
Critical Psychiatry Sheffield
Health and Social Care Act 2001: The NHS is required to consult
and involve service users under
of the Health and Social Care Act 2001. The bill for this Act had sought to
abolished Community Health Councils and established successor
organisations, but this part was
delayed until after the General Election. One or other Act
extended Overview and Scrutiny Committees remit to healthcare
In June 2001 the Management Committee of
Tower Hamlets African and Caribbean Mental Health Organisation
(THACMHO) agreed to set up
a sub-committee to develop a programme for Black History Month in
internet archive of the
Camden Mental Health Consortium website
Friday 29.6.2001 Unexpected death of
Mary Barnes, aged 78, in Scotland. Reported in the
second issue of the theraputic communities newsletter.
30.6.2001 Independent on Sunday
launched campaign against proposed Mental Health Bill.
July 2001: International
Mad Pride Month)
9.7.2001 to 13.7.2001
Royal College of Psychiatrists Annual Meeting in London
9.7.2001 "Day of Action" -
(Asylum 2002, volume 1)
Saturday 14.7.2001 "Psychology Politics Resistance: Asylum in the
21st Century" (4th annual meeting of PPR)
(external link to report) - See also
23.7.2001 Archive of
On the Side
News Release: User-Led Research is the way forward for improved services,
says the Mental Health Foundation
September? 2001 Sheffield Conference "Start on Success. Recovery in
Action." organised by
Publishing. This was the fourth Annual Conference of Handsell
Tower Hamlets African and Caribbean Mental Health Organisation
(THACMHO) organised a
history walk concentrating on sites associated with five African writers
who had contact within the East London area now known as Tower Hamlets
during the latter part of the 18th century.
Distress Awareness Training Agency (DATA) website. See
Survivors History archive. The website was
simplified to a single page about November 2004.
First Internet Archive of
Schizophrenia Ireland website. The
first with significant content is
"Relatives Support Groups. Schizophrenia Ireland branches and support
groups have meetings once a month where parents and relatives can talk
about the problems they have coping with schizophrenia in the family.
Information and support are available for all. The groups also arrange for
psychiatrists and others to come and give talks from time to time. 31
groups meet in various locations throughout the country. Many of the
support groups also arrange social activities for those relatives and
friends who have schizophrenia."
"Groups for people with schizophrenia: PHRENZ Groups are mutual support
groups for people who have schizophrenia or similar illnesses. PHRENZ
Groups currently meet in Dublin, Mayo, Kerry, Cork, Ennis, Galway and
Longford. In addition to the support meetings, additional social activities
are arranged for Sunday afternoons and various times during the week, but
does depend on the Group. Focus of the groups are structured discussion,
and are facilitated by Schizophrenia Ireland. staff. All groups welcome new
World Federation for Mental Health congress held Vancouver,
Canada, with the theme "Respecting Diversity in Mental Health in a Changing
Mad Pride march
Jack McConnell, new First Minister of Scotland. He promoted
Malcolm Chisholm to Minister for Health and Community Care
"Malcolm Chisholm was invited to numerous
Edinburgh User Forum meetings mainly around the Crisis Centre
agenda. So when he then became the minister for Health and Community Care
he was very sympathetic to the case that was being made by the mental
health service user movement" Keith Maloney
Edition of Mental Notes welcoming
Mary O'Hagan as a member of the New Zealand Mental Health
December 2001 Jeff Walker first employed by
Bristol MIND. "Before
that I was
a volunteer with the organisation and before that I was actually
a Bristol MIND service user." He became Director of Bristol Mind, but was
made redundant in the spring of 2008. His period is regarded as
constructive for service users, in particular because of the way Mind
resources were shared with service user groups. See
his own statement - Bristol index
"Rethink's media volunteers: Since 2002, Rethink has trained and supported
people directly affected by severe mental illness to
speak about experiences in the media. In 2007, 37 people told their story
in the media through Rethink's media team."
Shaping Our Lives National User Network became an independent
External link to website -
SOLNET: Shaping Our Lives Networking website
a national networking website run by and for
service user groups to share good practise, information and to empower
service user involvement.
The Research Governance Framework, brought in by he Department of Health
in 2002, placed a responsibility for organisations to involve those people
who use services and their carers in the evaluation of services. (See
"Pathways to Policy" programme ran from 2002 to 2005 in
eight countries, funded from the UK Big Lottery Fund. Starting in Estonia
and Poland, in the second year it expanded to Bosnia, Romania, Armenia and
the Kyrgyz Republic. In 2004 and 2005 new forums were launched in India and
Albania. An international conference was held in Slovenia in
Jan Wallcraft Turning Towards Recovery? - A study of personal
narratives of mental health crisis and breakdown, unpublished PhD
thesis, South Bank University. - See
recovery movement - Jan's paper
"Recovery from mental breakdown or illness"
offline copy) appears to relate from about
Brian Hartnett "My voices and delusions got worse and I began to
exist again on a very basic level. I still kept my illness to myself. I had
learnt that people were confused and even scared when I spoke of it so I
kept it in the closet. I knew very little about it but I did want to meet
other people with similar experiences. Through the internet I became aware
Schizophrenia Ireland and I emailed them to see if they ran
self-help groups. As it turned out they set up a group in
Limerick and I
attended from the start. It was a great thing for me to finally meet people
with similar experiences but I was surprised that none of the group heard
voices. I thought that hearing voices was part of the experience but I soon
learnt that was not necessarily the case."
National Institute for Mental Health in England sets up
user/carer 'Experts by
Experience' national consultative group. (On Our Own Terms 2003 Table 4)
"The Expert Patients Programme, set up in April 2002, is an
NHS-based training programme to help people living with long-term chronic
conditions to develop new skills to manage their condition better. Expert
patients will include people with long-standing mental health problems
such as bipolar disorder." (Mental Health and
Social Exclusion, June 2004, page 44)
April 2002 Report of first
User Focused Monitoring
research project. User Focused Survey of Inpatient Services in Three
Blackberry Hill -
Archive of first
reprint April 2004 -
link to website - Bristol index -
[Anne-Laure Donskoy was Research Coordinator for the Bristol project. It
was "permanently closed" in July 2009]
Critical Psychiatry Birmingham
talk to a Birmingham Conference:
If we look at the contemporary movement we can see a wide range of action
encompassed with this. Simply listing that we can identify, at least:
Individual advocacy - both peer and self advocacy in a range of settings,
including special hospitals and in the context of care planning.
User councils on hospital wards and in community settings.
User run drop ins and support services.
Mad Pride - celebrating the mad experience through arts and
Protest action - such as the lobby of parliament against Community
Treatment Orders in 2000.
Forums in which alternative understandings of experiences can be explored
and developed - such as
Hearing Voices Forums.
Projects which make links between the experience of mental distress and
other experiences of disempowerment and issues of sustainability, such as
Direct involvement of service users in policy making at local, regional and
User led research.
User trainers and consultants.
We can also identify groups which provide an opportunity for black service
users to give voice to their particular experiences, and other sites in
which women are supporting other women, or workers who are also users
within the mental health system come together.
website of Simon Heyes - South West Mental Health User
Development Worker. (Date of first archived update).
Link to international archive
29.5.2002 Bristol Hearing Voices Network Self-Help Group launched on
with the help of
Ron Coleman, following a number of 'consultation' meetings,
organised by Tim Dowling. The group met weekly, initially at Methodist
Church Hall in Redcliffe, re-locating to
Bristol Mind offices in
February 2004 (see
October 2004), with the support and help of
Jeff Walker (Director
of Bristol Mind).
(external link to history)
A Summer of Protests Against the Mental Health Bill - See
internet archive of the
National Self Harm Network - By this time its address was Po Box
16190 London NW1 3WW
Act that abolished
Community Health Councils
David Crepaz-Keay registered the website domain name:
"Madness is an elevated state of mind. Many seek madness but only a
minority achieve it. The Psychotic aims to bridge the gap between the
incomprehensible world of the sane and the madness that we understand."
The Psychotic is produced by mad people (a clinical diagnosis is
helpful but not essential), if you wish to contribute, please contact
us using the links below. All contributions are accepted on the
all items copyright The Psychotic
all contributions will be anonymous
the anonymity of other contributors must be respected
all contributions must be funny
the editors sense of humour is final.
Lost & Found
Missing: the survivor movement, last seen in 1997 under a large pile
of consultation documents.
8.9.2002 First archive for
the psychotic detained
The psychotic is currently being detained under Section 2 of the 1983
Mental Health Act.
Please e-mail email@example.com if you wish to be notified of
the psychotic's release.
July 2002 Open Up: Mental Health Media's Anti-discrimination
External link to website
30.7.2002 The Regaining Control Conference 2002 - Friends Meeting
House, Oxford. Organised by
National Voices Forum in conjunction with
UK Advocacy Network.
Strategies for Living Newsletter
"incorporating news on survivor/user led research, adult mental
health and user empowerment". - The
Alison Faulkner left. In June, Alison had been replaced as
"Head of Strategies for Living" by Toby Williamson - See Press Release
23.9.2002. Toby, it said, would also open the
Big Alternative Conference in October.
September 2002 First issue of Planet Advocate described as
"News from Advocacy Across London and Beyond" - Now described as "a
magazine about Indepenent Advocacy".
External link - See
Terry Simpson's article in 2007
Unofficial march against the Mental Health Bill - Despite
cancellation by the
Mental Health Alliance which had cancelled the march
because, as Paul Farmer said
"Fears were expressed that the alliance could not guarantee the health and
safety of the march participants in the atmosphere of misunderstanding of
people with mental health problems in the wake of
events in Soham," (quoted
Irish Advocacy Network received
funding from the Department of Health
23.9.2002/24.9.2002 Induction for the five regional advocates
to clarify the job description and discuss their needs.
Scottish Independent Advocacy Alliance
Melrose House, 69a George Street, Edinburgh EH2 2JG.
The Scottish Independent Advocacy Alliance
was established in September
2002. It was set up as a result of the work undertaken by its
Advocacy 2000, a three-year project set up to look at the needs
Advocacy Movement in Scotland, and how these could be supported in the
future. - website
Thursday 3.10.2002 Fifth Big Alternative Conference
Strategies for Living - This time in
association with Pavilion. [Appears to have been the last one]
October 2002 Issue three of The Voice of
SIMBA: let the tiger
Mental Health Alliance lobby of UK Parliament. At this time, the
core members of the Alliance were Afiya Trust, BASW, British Psychological
Society, Clinical Psychology Centre, CPNA, Critical Psychiatry Network,
Ethnic Health Forum North West, GLAD, King's Fund, MACA, Manic Depression
Fellowship, Mental Health Foundation, Mind, POPAN, Rethink, Richmond
Fellowship, Royal College of Nursing, Royal College of Psychiatrists, SANE,
SIRI, Turning Point, UK Federation of Smaller Mental Health Agencies, UKAN,
UNISON, United Response, US Net, Voices Forum and Young Minds.
Thursday 14.11.2002 Mind "Roots to Recovery"
at Cardiff included contributions from
14.12.2002 Suicide of
18.12.2002 First meeting of the Steering Committee to oversee the
review of legislation and policy for services for people with a mental
health problem or a learning disability in Northern Ireland held at the
Dunadry Hotel, Templepatrick. The Chair, Professor David Bamford, appointed
in October, died before the committee reported and the committee was named
the Bamford Committee in his memory. The 20 plus members included
"users of mental health services, a representative of carers and a patient
advocate". Martha McClelland, Chief Executive of
Mind Yourself, was
a member of the steering committee and chaired a reference group of users
of mental health services. Mind Yourself is a self-help and advocacy
project (15 Magazine Street, Londonderry, BT48 6XL, Tel. 02871 263461)
which provides peer support to people who experience mental health problems
in the Foyle area.
Just before Christmas 2002 Stronger than Ever: The Report of the
First National Conference of Survivor Workers UK, written
and edited by Rose Snow. Published: Stockport: Asylum, 2002. 76 pages.
1.1.2003 Review in Psychminded.
A copy in the British Library is the only one listed on
Strategies for Living newsletter
Includes a report on the
Alternative Conference by Torsten Shaw from
2003 The Commission for Patient and Public Involvement in Health
established to oversee a new system of Patient and Public Involvement.
Community Health Councils cease and
Patient and Public Involvement forums began operating at the end of the
archive of website from which comes this
David Crepaz-Keay: Mr Crepaz-Keay is Chief Executive of Mental
Health Media, an organisation which challenges discrimination around mental
health by promoting the voice of mental health service users in all media.
Prior to this Mr Crepaz-Keay was a consultant to local NHS Trusts, Social
Service Departments and voluntary and academic organisations, offering
training and development, and as a writer and lecturer on mental health
user involvement. In the voluntary sector he was Chair of Survivors Speak
Out, a national service user group, and Vice Chair of Wokingham MIND. Mr
Crepaz-Keay declared membership of the Liberal Democrats, no Ministerial
"From 2003 until its demise I was, as a mental health service
an active participant in the Patient and Public Involvement structure
in England, firmly believing this to be a huge legitimised
opportunity for all service users. I was also, along with a few
hundred other users, a very active, serious critic of the Commission
for Patient and Public Involvement in Health (CPPIH) - a collection
of civil servants who, with their ignorance and incompetence were
wrecking what should have been a positive and constructive idea.
One of my supporters and a regular correspondent in those years was
Des [Desmond Curley] and he made some very useful contributions to my
addition, one of the vehicles for campaigning against CPPIH was
(Mike Cox email 28.2.2011)
2003 Tees and North East Yorkshire NHS Trust established ARISE:
Accessible Research Involvement for Service Evaluation, a service user
and carer led research and development course, and DEVELOP, a
service user and carer led independent research organisation. They sought
to "build research capacity among service users and carers". Research
commenced in July 2005.
developing partners (dp) was founded in March 2007 by
who had been part of ARISE. - See
google transcript of power point presentation: "It all started
with the introduction of the
Research Governance Framework by the
Department of Health in 2002"
Annabel Jackson 2003 Doing it ourselves - Learning to challenge social
exclusion through voluntary arts Cardiff: Voluntary Arts Network, 2003.
76 pages. Produced by the Department for Education and Skills. Contains a
substantial section on
2003 The Community Engagement and Service User Support
(Comensus) project established by the Faculty of Health at the
University of Central Lancashire. Led by service users and carers, it aims
systematically to enhance service user, carer and community involvement
within all academic activity. See
Nursing Times report -
Consumers in NHS Research Support Unit News
includes a report by Virginia Minogue and
on an ECT evaluation
an article on Peer Reviewing by
Tina Coldham and an article on
Suresearch - At this time the contact for Suresearch was "Amanda
Owen-Meehan, SURESearch Administrator, Department of Social Policy and
Social Work, University of Birmingham".
January? 2003 Start of SURGE: Service-User Research Group
Part of the
Mental Health Research Network -
See December 2003
Guidelines 15.6.2005 -
Jan Wallcraft (2005) - Newsletter 1 (Autumn 2005)
- Service User Participation in
Clinical Trials (March 2006) -
Newsletter 2 (Spring
Newsletter 3 (Summer
28.8.2006 to 22.12.2007
archive of website -
Winter Bulletin 2006
(August 2007) -
Staff resign December 2007 -
Jan Wallcraft explains February 2008 - Relaunched as
Service Users in Research in March 2009 -
Newsletter 1 -
Newsletter 2 -
Friday 21.2.2003 13:30 to 15:30 "Consumer welcome" session at
World Federation for Mental Health Congress in Melbourne. "An
excellent opportunity for consumers / users / survivors to come together to
meet each other and renew friendships before the scientific program
commences." One of the keynote speakers at the Congress was
25.4.2003 Royal Assent for the
Mental Health (Care and Treatment) (Scotland) Act 2003. By
(1) Every person with a mental disorder shall have a right of access to
independent advocacy; and accordingly it is the duty of-
(a) each local authority, in collaboration with the (or each) relevant
Health Board; and
(b) each Health Board, in collaboration with the (or each) relevant local
to secure the availability, to persons in its area who have a mental
disorder, of independent advocacy services and to take appropriate steps to
ensure that those persons have the opportunity of making use of those
Hector MacKenzie from the Scottish Executive Health Department played a key
role in getting advocacy into the Act. He had asked other departments to
commit money to a pool for a general advocacy service, but they declined.
Spring 2003: In
The Naked Bird Watcher, Suzy Johnston told the story of
her fall out of sanity and her flight back. Suzy's work is part of the
survivors' movement in Scotland.
Strategies for Living Newsletter
Issue 18. Includes plans for a joint conference with Down
Lisburn Trust in May 2003 on User-led Research in Mental Health.
March 2003 Launch of Asylum Associates.
(Asylum Vol.13 no 4)
The Mental Health Service User Movement in
and Michael Bryant.
Strategies for Living Newsletter
Issue 19 - Includes proposal from the Survivor Researcher
Network for a book This is Survivor Research
(eventually published 2009)
On Our Own Terms -
Users and survivors of mental health services working together for support
and change, by
Jim Read and
On Our Own Terms Steering Group
Following On Our Own Terms (See
18.7.2003 and 12.9.2003) a "Steering Group" met
three times (London
and Sheffield 23.2.2005)
and find a way of taking ideas from the report forward. A meeting planned
for Bristol on 6.4.2005 did not take place. The Steering Group also had a
newsletter, the last two of which were issuesd in
April and June 2005.
The work of the Steering Group
culminated in a general meeting held in London on
"for a wider group of stakeholders".
This was funded by the Sainsbury Centre from 2003 to 2005. The Mental
Health Foundation (MHF) was then approached for support in accessing
funding to carry out the plan agreed by the group.
[See early 2006]
The Mental Health Foundation and Together
then organised a conference in
March 2006 in Birmingham, and subsequently pulled together a
group of people that became known as the Network Planning Group
June 2003 Launch of the Shaping Our Lives National User
Network. More than 250 people took part, most of whom were service
users. It was also attended by Stephen Ladyman MP, the new Under Secretary
of State for Health and Minister for Community. Stephen Ladyman heard
delegates concerns about problems with payments for participating in user
involvement whilst on state benefits. He asked for a report on the
18.7.2003 Letter from Jan Wallcraft to people who took part in the
research on the
mental health service user movement, enclosing a copy of
the summary and speaking about the meeting on
12.9.2003. "This meeting
will also build on work Beverley [Mills] began last year, under the title
of Empowerment National User Forum
18.7.2003 Launch of
Sun International website
August 2003 "User and carer involvement in mental health services:
from rhetoric to science" by E. L. Simpson and A. O. House. An editorial
published in the
Psychiatric Bulletin of the Royal College of Psychiatrists:
12.9.2003 Meeting at the
Sainsbury Centre for Mental Health of "people active in the
service user/provider movement" to discuss "taking forward the
Our Own Terms
Saturday 20.9.2003 Outcry - A Conference of Direct User and
Survivor Voices Speaking Out Against Prejudice and Compulsion organised
by "Protest Against the Bill" (that is, the draft Mental Health Bill). -
Strategies for Living Newsletter
Issue 20 devoted to "findings from the user-led research
different aspects of coping with mental distress, we have been supporting
over the last three years"
10.10.2003 Phrenz of the Media launched on
World Mental Health Day by members of the
Limerick and Ennis Phrenz support group. Phrenz of the Media has closed but
Brian Hartnett "Another event I was involved with at the time
was the phrenz of the media project. This brought the Limerick and Ennis
Schizophrenia Ireland groups together to develop an idea to use the media
to help reduce the stigma associated with people with mental health issues.
The idea developed into a website with an animated piece depicting a
persons suffering from stigma attached to their mental health difficulty
and also an audio piece which is an edited conversation held between the
members of the Limerick and Ennis groups. The finished project was a great
success and I am proud to have been involved with it."
Monday 13.10.2003 - Tuesday 14.10.2003 - Wednesday 15.10.2003
conference of the
Irish Advocacy Network held in Jackson's Hotel and Leisure Club
in Ballybofey, County Donegal
Monday and Tuesday: Users/Survivors only - Wednesday: Everyone Welcome
led research: reflections on supporting user-led research projects by
Vicky Nicholls, S. Wright, R. Waters, and S. Wells published by
Mental Health Foundation. -
Link to publications website. This appears to
represent the end of the
Strategies for Living project.
Mental Health User/Survivor Research in the UK - A Policy
Briefing (Extended Version) from the
Mental Health Foundation
10.11.2003 - 11.11.2003 - 12.11.2003
Meetings at Northern College (Wentworth Castle), Barnsley, Yorkshire, that
Paranoia Network -
internal archive - external link - Now the National Paranoia Network.
website may have been established in summer 2012. "The Paranoia
Network was originally launched in 2004. It is run by
Peter Bullimore, Kate
Crawford and Tori Reeve." "The organisation aims to raise awareness of how
disabling paranoia can be and to breakdown social taboos". "The first
Paranoia Network in Australia was launched on the 5th April in Perth
Australia following the work of the Paranoia Network in Melbourne, Sydney,
Perth, Brisbane and Cairns".
Life and Living radio started
Tower Hamlets African and Caribbean Mental Health Organisation
(THACMHO) organised a
reminiscence conference on the history of West Indian Seamen who sailed
regularly during the 1950s and 1960s on the Harrison Shipping Lines to the
West India Docks.
4.1.2004 HUG (Highland Users Group)
press release about award of MBE to
Graham Morgan in the New
Bristol Hearing Voices Network Self-Help Group relocated in the
Bristol Mind office.
SIMBA required to vacate their base, the Jane Field Room, at the
Maudsley. Asked The Lorrimore for support.
April 2004 First foundation trusts established with Boards of
June 2004 Mental Health and
Social Exclusion Social Exclusion Unit Report.
(External link to download a copy)
"Nearly one-third of
respondents... felt that increased
involvement of adults with mental health problems in the design and
delivery of mental health
services would help promote social inclusion".
July 2004 The Department of Health announced the
Patient and Public Involvement in Health
would be abolished in summer 2006
and "stronger, more efficient arrangements will be put in place to provide
administrative support and advice to Patients' Forums". The Parliamentary
Under-Secretary of State for Health (Miss Melanie Johnson) told the House
of Commons that Patient and Public Involvement forums "are the cornerstone
of patient and public involvement. They will not be abolished"
Thursday 1.7.2004 to Saturday 3.7.2004.
Second International Conference (Imaging Social Movements) of The Social
and Cultural Movements Group, at Edge Hill College, UK. -
presented a paper on Psychiatric 'Survivor' Knowledge and Testimonies
of Selfharm which was published in 2005. In 2005 he also published a
paper "Self-Harm 'Survivors' and Psychiatry in England, 1988-1996"
(See bibliography - both papers available from this site)
Rutland Healing Group Organisation started. In summer
2005 it started to plan a history of mental health project called
Heritage Mental Health.
Launch of the PINE (Participation in Nursing Education) project, which
aimed to develop a model of service user involvement in curriculum design
and contribute to our knowledge about the impact of user involvement on
students' learning about mental health.
(external link) - Stimulated by
Making Waves - Associated with Sharon Roberts and Theo Stickley
Details of training 18.7.2005
Wednesday 21.7.2004 The following email was sent to
1.. The story goes something like this - in 1983 members of Glasgow Link
attended the Mind annual conference in London. They were
and angry that none of the presentations, seminars or workshops were
presented by service users/survivors. So they returned a year later in
1984 and gave the first presentation by service users at a Mind
They used a slide show and presented their own experience of
mental health services in Scotland - interspersed with 6 key topics:
policy/services/community care/employment/housing/self-help - each topic
was briefly explored and then they presented thier ideas as to what might
make things better (their overall description of mental health services in
Scotland was 'abysmal').
They eventually made this presentation into a
tape-slide programme and then I copied it to video when working with them
in 1985. I found the video in my loft space recently and replayed it. It
is a fascinating snapshot of what service users were saying 20 years ago.
It still has a real strength and power and much of what they say,
particularly on employment and self-help sounds almost current.
I don't think they've made it into any of the history books about the
user/survivor movement, so I thought I'd record their contribution and
send it to a few people. Their names: Charlie Reid, Christine Cowan,
Elvira Ridley, Thomas 'Tam' Graham, Vince Edkins and John McManus.
2.. How far have we come in 20 years since then? - survivors/users and
allies. A lot has been achieved but there are still enormous resistances.
I have been trying to get universities to do more but they are such big
institutions and so steeped in British paternalism (the places not the
people of course) and they seem addicted to knowledge without passion -
all mind and no feeling............ I had this recent idea......maybe
there should be a subject 'survivor studies - mental health'...this could
link to other branches of survivor studies. What do you reckon?
Thurstine Basset Consultancy Ltd
Flat 2, Rutland House
111 Marine Parade
Wednesday 24.7.2004 Sixth informal meeting of the Patient and Public
Involvement Forum for
Manchester Mental Health and Social Care.
Alan Hartman and
Tony Riley present. See also
Wednesday 24.7.2004 BBC website
"How art can ease a troubled mind"
includes interview with
Alison Faulkner "who has been a psychiatric patient on seven
separate occasions over the past seven years".
MadforArts launched about August 2004
"MadforArts is a web and tv project which aims to encourage people with
mental health issues to talk about art that inspires them. This project is
by the Community Channel, and is funded by Culture Online, part of the
Department for Culture, Media and Sport." "Partners in the project are
Mental Health Media and Rethink".
David Crepaz-Keay oversaw the bulletin board on the website.
September 2004 The National BME Mental Health Network (BMEMHN)
offically launched The Afiya Trust's annual two day conference in
Manchester. It aims to highlight the concerns
of black and minority ethnic
mental health service users and organisations.
"With special thanks to: Peter Munn - Yvonne Parfitt -
Jeff Williams - Roy Jones - Lindy Miller - Dr Zoë Thomas -
and the many service users and carers
involved in developing this guidance."
Stronger in Partnership 2 said that Stronger in
Partnership 1 (as it will now be referred to) was "an idea conceived by
a user of mental health services in Wales. They also suggested a 'Charter'
and a 'Checklist' be developed which could help commissioners and providers
of mental health services reflect and then improve upon their engagement
with people who either currently use or have used mental health services in
20.9.2004 Publication of
Forgotten Lunatics of the Great War - "To have hidden the
servicemen I am writing about behind a cloak of anonymity would have
implied that there was something discreditable or shameful about their
histories" (Barham, P.
2004 p. 9)
October 2004 Bristol Mind's "work with small user groups - offering
advice, free meeting room space and access to office equipment" had been
central to its successful bid to the Big Lottery Fund. Regular meetings of
small user groups at its offices included the Hearing Voices
Group, Southmead Users Network, Bedlam FM, The GLoBe and the
Service User Reference Group. The
annual report spoke of "plans
to develop a package of training and establish a mutual support network
between the groups". Bedlam FM was a community radio project. Penny Hayes
was involved in its administrative activities for about 18 months from 2005
to September 2006. See Bristol index
October 2004 Issue 9 of W ~ W
(WOMEN WORKING WITH WOMEN) Newsletter of the
North West Regional Forum for Women with Social Care and Mental Health
Needs (Archived copy)
8.10.2004 to 10.10.2004 International Mental Health
Conference and Policy Review "Rethinking Mental
Health Policy: People, Participation and Power" held at
Lake Bled, Slovenia. Organised by
Hamlet Trust (UK), Mir Srece
(Slovenia) and a coalition of grassroots mental
health policy organisations from Central and
Eastern Europe and Central Asia.
28.10.2004 First meeting of the
On Our Own Terms Steering Group
held in London.
The ethics of survivor research: Guidelines for the
ethical conduct of research carried out by mental health service users and
published by Polity Press in association with the Joseph Rowntree
Foundation at £9.95, but with a
free pdf download.
"The guidelines are not intended as rules,
but as helpful guidance on some of the difficult and important issues to be
considered prior to a research project or research training programme.
There are helpful hints and suggestions, as well as quotations and ideas
reflecting the experience of people who were consulted for the development
of the guidelines." (Press release 15.11.2004)
About twenty people attended, including many leading figures in the
survivor movement, The meeting was memorable because it centred on a
presentation of films:
1) Peter Lindley showed a film about the 'genetics' movement around the
time of World War Two. He made some links between the film and attitudes to
people with mental health problems.
showed extracts from
'Speaking from Experience' and 'Glasgow Link Tape" Slide Show'
3) Mel Gunasena showed her video "Evolving Minds - an exploration of the
alternatives to psychiatry and the link between psychosis and
external link to interview]
Anne Beales, who attended the meeting, suggested
as a base for a possible group.
- This was followed up by an email in
Together's Service-user involvement Directorate
(website) was set up in 2004 "to
strengthen the voice of those who use our services and to
support service-user involvement nationally". A
press release on 3.12.2004 announced
Anne Beales as the first Director of Service-user Involvement.
"Before joining Together Anne was the Director of the
Capital Project Trust based in West Sussex. A qualified Social
Worker, she has worked for a number of London Councils. She is also a
member of the
NIMHE South East
Centre's Management Board." Anne is an active member of
Service Users History Group. In November 2007 she was awarded an
MBE for services to mental health.
2.12.2004 Second meeting of the
On Our Own Terms Steering Group
held in Manchester.
2005: Mark Cresswell: "Self-Harm 'Survivors' and Psychiatry in
1996" Social Theory and Health, 2005, 3, pp 259-285
website of the Gorbals Link Club
Tower Hamlets African and Caribbean Mental Health Organisation
Power Writers and the Struggle Against Slavery - Celebrating five
writers who came to the East End of London in the 18th century - Phillis
Wheatley, Ukawsaw Gronniosaw, John Marrant, Olaudah Equiano, Quobna Ottobah
"Information, consent and perceived coercion: patients' perspectives on
electroconvulsive therapy" by
Diana S. Rose, Til H.
Jonathan P. Bindman, and Pete S. Fleischmann, published in The British
Journal of Psychiatry volume 186: pages 54 - 59. Included a
"Declaration of interest" that Diana Rose and Pete Fleischmann had been
recipients of ECT and that Jonathan Bindman had administered it. The
research was funded by a grant from the Department of Health and three of
the researchers were based at
Service User Research Enterprise (SURE).
Tuesday 25.1.2005 "Waddington Street". First web-recorded meeting of
SURF (Service Users Reaching Forward), which brings the users of mental
health services in the Durham and Chester-le-Street Primary Care Trust area
and their carers together to discuss issues and exchange experiences.
Internet archive starts 2.3.2005 - Minutes of
a meeting 27.3.2007 - Mark Henderson, chair of SURF, was one of
the early members of the management committee of the
National Survivor User Network.
10.1.2005 Celia Hughes died (relatively young) after a long
Survivors Speak Out. Celia had almost singlehandedly kept
Survivors Speak Out going
after 2000 when all the funding for an office and
Diorama in London had been exhausted. Following this, Diorama
continued to allow meetings free of charge and Celia organised these.
First archive of the Discourse Unit website.
23.2.2005 Third meeting of the
On Our Own Terms Steering Group
held in Sheffield. (no minutes available)
SIMBA's funding due to run out. In April 2005, SIMBA officially
became part of The Lorrimore, and its funding was secured for the immediate
future. 20.4.2006 details: Organisation Name: SIMBA - Share In Maudsley
Black Action - Description: User-led organisation for black mental health
services, providing a forum for mutual support and self-help. -
Address: 1 Amelia Street, London, SE17 1PY -
Telephone 020 7277 3428
Spring/Summer 2005 Survivors' Poetry website set up
April 2005 Making a Real Difference
Strengthening Service User and Carer
NIMHE Final report.
(External link to download a copy) - See
In April 2005 I was still working at the Sainsbury Centre and issuing
regular newsletters from the
On Our Own Terms project.
I have the April and June issues of the Newsletter, which were the
penultimate and last issues, and a short document about the On Our Own
Terms and Beyond General Meeting. Then a notice dated March 2006 of a
conference - presumably the Birmingham event (from Together and the
Mental Health Foundation).
Exhibit A: On Our Own Terms Newsletter April 2005
News on the Mental Health Bill from Jan Wallcraft.
An update on Direct Payments
An item about the Shaping Our Lives National User Network
Exhibit B: On Our Own Terms June 2005
A flier for the On Our Own Terms general meeting
An item on Women from Black and Minority Ethnic Groups and Self Injury
(From Bristol Crisis Service for Women)
An item on Service User Survivor Trainers Network (SUSTN)
An item on the Mental Health Act Commission inviting people to join
their service user reference group
An item on UK Advocacy Network inviting consultation
An item by a service user about his life and his benefits appeal.
April and May 2005 Members of the
Scottish Recovery Network interviewed 67 people about their
personal experiences of recovery. The "story collection days" were in
Edinburgh (Friday 15.4,2005) - Glasgow (Friday 22.4.2005) -
Aberdeen (Friday 29.4.2009) - Dundee (Friday 6.5.2009) -
Dumfries (Friday 13.5.2009) - and Inverness (Friday 20.5.2009).
Briefing paper April 2005 -
offline copy -
Since that time "we have been writing up the interviews and
creating anonymous recovery story vignettes based on the interviews".
64 stories from the project are
on their website and twelve are in a
Journeys of Recovery -
offline copy - See
HISTORY OF THE SERVICE USER/SURVIVOR MOVEMENT
Text of the notice circulated for the first official meeting
Thursday 21 April 2005 at 10.30 am
MACA, 1st Floor, Lincoln House, 296-302 High Holborn, London
10.30: Welcome to MACA - Why is our history important - Anne Beales -
Director of Service User Involvement, MACA
10.45: Survivors Spoke Out - A reprise on 5 key/significant
events/happenings for the user/survivor movement over the last 25 years -
11.00: Materials for an archive - taking stock of what we've got? -
participants in the day are encouraged to bring along a couple of items
11.30: Short break and viewing of items
11.45: Planning ahead: Archive/exhibitions/September training
N.B. Please contact..........to let us know if you are coming and book your
15.6.2005 Publication of
Guidance for good practice : service user involvement in the UK Mental
Health Research Network by
Service User Research Group
England (SURGE) - Followed in November by
Brief Guide to Involving Mental Health Service Users in
Research, by Louise Morgan.
The agenda for this meeting was
HISTORY OF SERVICE USER INVOLVEMENT
MONDAY 20TH JUNE 2005
1st Floor Lincoln House
296-302 High Holborn
London WC1V 7JH
1pm Lunch then the meeting commences
2pm Welcome and introduction by Anne Beales, Chair
2.10pm History of the black service user survivor movement
3.20 Terms of reference and plan of action
4pm Creating our own histories - perhaps two interviews (taped)
4.30 Plans for September conference exhibition and workshop
Exhibit C: General Meeting of On Our Own Terms steering group and
wider membership was held on 29th June 2005 (at the Rose Suite, Avonmouth
This marked my handover of the OOOT process to
Lisa Haywood as I was
Facilitator - Martin Farrell
Co-ordinator - Lisa Haywood
Administrator: Beverley Taylor (SCMH)
Welcome: Lisa Haywood
Aims: Martin Farrell
Where the User Movement has come from: Jan Wallcraft
How a strong and united network of mental health user organisations
could help shape our future: Patroc Wood (OOOT Steering Committee)
Discussion on last ten years and important things to shape our future
- small groups
Recommendations to the OOOT Steering Group on what the network could
do and how it should be organised - small groups
What next? Groups and feedback
Next steps and review of the meeting - All
Angela Linton - Black Women's Mental Health Project
Peter Munn - Humunn Resources
Philip Dixon-Philips - UK Federation of Smaller Mental Health Agencies
Miranda Telfer - Bruised UK
Angela Sweeney - IoP
Millie Reid - Southwark Mind
Chris Wright - Outcry
Roberta Wetherell - Advocacy Mental Health Action
Reg McKenna - Nimhe Eastern
Patrick Wood - UK Advocacy Network
Diane Hackney - PAB
Jim Thompson - Depression Alliance
Donna Smart - Borderline UK
Carey Bamber - NIMHE North West
end of June 2005
David Crepaz-Keay appointed Head of Patient and Public
involvement for the
Mental Health Foundation
July 2005 The Department of Health announced that the
Commission for Patient and Public Involvement in Health would
abolished until summer 2007
July 2005 User Controlled Research -
Its meanings and potential - Final Report by
Michael Turner and
Peter Beresford, published by
Shaping Our Lives and the Centre for Citizen
Participation, Brunel University. Commissioned by
offline copy -
Manifesto - we, as a group, aim to:
Be committed to learning from history
Value and celebrate the contribution that mental health survivors have
made and are making to that history
Highlight the diversity of survivors in all its expressions
Highlight the diversity and creativity of the survivor contribution
through personal accounts, writings, poetry, art, music, drama,
photography, campaigning, speaking, influencing...
Collect, collate and preserve survivor history
Make survivor history accessible to all who are interested in or
studying mental health
Be survivor-led with a steering group made up of a majority of
survivors with some interested and co-opted allies
Operate as an independent group
21.7.2005 National Perceptions Forum Conference in London called
'Discovering Autonomy'. Speakers included Chris Barchard [ex-service
user/Perceptions chair], Jan Wallcraft and Rachel Perkins.
external link to report
DOES SOMETHING NEED ENTERING HERE?
4.8.2005 Planned meeting to which Lisa Haywood was to take proposal
On Our Own Terms Steering Group to a meeting with the Mental
Health Foundation. This meeting would be between Andrew McCulloch,
Lisa Haywood, Patrick Wood, Angela Linton, Louise Relton and
Peter Relton. [WHAT HAPPENED NEXT??] See
Thursday 15.9.2005 5th Annual Mental Health Training and
Conference - Organised by Pavilion - ORT House Conference Centre,
London - Theme: "Putting service users and carers at the heart of mental
health training and education".
external archive of programme from which
conference details have been copied.
8.9.2005 "CPPIH got
Mike Cox's critical
PPeyes website closed down" - Desmond Curley launches campaign
to get "CPPIH Commissioner
Keay's website called the Psychotic
closed down as well"
See PPI Forum
22.9.2005 Launch of
Pathways to Policy
programme in Tirana gives Albanian service users a say in mental health
policy - "I have used mental health services for many years, but I've never
before had an opportunity to stand up and give my opinion of how those
services should be run." (Orieta Kallushi)
Late 2005: Publication of Louise Pembroke's Dedication to the seven:
hearing voices in dance DVD with 20 page booklet (spiral binding) of
background information and ideas for group discussions.
Published: London : Mind, 2005. Filmed at Laban, London by Chris Clow;
background music by Arvo Part Celia Hughes.
"My dance is about my experience of living with what is
labelled as 'psychosis', specifically hearing voices and seeing
October 2005 Michael Turner and Peter Beresford Contributing On
Equal Terms: Service
user involvement and the benefit
system, published in 2005 by the Social Care Institute for Excellence -
External link to a copy
- There was a previous report (unpublished) in 2003.
Louise Pembroke proposed that
INTERVOICE (The International
Network for Training, Education and Research into Hearing Voices) should
hold its own
World Hearing Voices Day.
Sunday 9.10.2005 Avon Service User Reference Group
World Mental Health Day celebrations.
Autumn 2005 "
Service User Research Group England - Mental Health
Winter 2005/2006 Poetry Exresss - The Survivors' Poetry
Quarterly issue 23:
(download as pdf) - Other issues can also be downloaded from the
Contesting Psychiatry: Social Movements in Mental Health
Nick Crossley. London: Routledge "Building on his extensive
research, the author
explores the key social movements and organisations who have contested
psychiatry and mental health in the UK between 1950 and 2000"
(Google Books extracts)
CSIP (2006), Reward and Recognition, The principles and practice of
user payment and reimbursement in health and social care. A guide for
service providers, service users and carers, Care Services Improvement
Partnership, Department of Health, London
David Armes, 2006. Enablement and Exploitation - The Contradictory
Potential of Community Care Policy for British Mental Health Service
User/Survivor-led Groups. Unpublished University of Bedfordshire Ph.D.
Raise! Mental Health Ltd
Raising mental health, hope and recovery through training
A limited company by guarantee, working to the social enterprise model,
entirely managed and staffed by service users; from the Manager to the
cleaner to the board of directors. Rented its first premises in January
Raise evolved out of a concept originated by Hampshire County Council in
2001 to offer capacity building, (anxiety management, confidence
building and assertiveness skills) and a train the trainers course to
service users. A pool of mental health service users were trained which
prompted the start of Raise. Raise does not receive any funding, but earns
all its monies, which are reinvested back into the company, by the training
and consultancy services it provides to anyone from any background.
(Information from Tracey Butler - Managing Director 29.10.2008)
January 2006 (England and Wales)
"Our society is based on the belief that everyone has a contribution to
make and has the right to control their own lives"
January 2006 "A Vision for Change" Report of the Expert Group on
Mental Health Policy
KEY RECOMMENDATIONS OF A VISION FOR CHANGE
Involvement of service users and their carers should
be a feature of every aspect of service development
January 2006 Earliest newsletter for Service Users Midlothian
preserved on the
websight. The address for SUM is c/o CAPS.
January 2006 to May 2006: Lisa Haywood "served as executive support at
strategic and policy overview of the national
organisation pending the selection of new chief executive." [Richard Brook
left Mind in February 2006 - Paul Farmer became Chief Executive of Mind in
March 2006] "Five months of executive support at National Mind during the
period between the departure of one CEO in 2006 and the arrival of the next
in 2007" probably refers to this period.
Friday 13.1.2006 An urgent need for reform of mental health
legislation in Ireland is the focus of a lunchtime seminar at the Irish
Centre for Human Rights, NUI Galway on Friday, 13th January 2006.
John McCarthy, the subject of a recent RTE Would You Believe documentary,
Diary of a Madman, which chronicled his personal experience of severe
mental illness, will deliver a talk on Mental Health, Human Rights and the
Law at the Irish Centre for Human Rights, Earl's Island at 12.30pm. The
Corkman has drawn on his own experience of mental illness which led to
suicidal tendencies, extreme loneliness and isolation over a three-year
period that saw him admitted to several mental health institutions.
Although his illness almost cost him his home, his livelihood and even his
own life, McCarthy has recovered to become an ardent campaigner for the
rights of the mentally ill.
As part of PRO Cork Advocacy Network, McCarthy has been campaigning for a
change in the law regarding the treatment of those with mental health
problems, and a change in society which would give people the dignity they
deserve. He believes that until the law is changed to end forced
incarceration, forced medication and electroconvulsive therapy (ECT) in the
treatment of mentally ill patients, society will not change its attitude
towards the issue of mental health.
McCarthy has been invited as a delegate to a forthcoming United Nations Ad
hoc committee hearing on the rights of the disabled. He is a member of
MindFreedom, an international organisation that campaigns for the human
rights of the mentally ill and has written a book of poetry based on his
experiences, Hope on a Rope.
Friday 27.1.2006 First
International Holocaust Remembrance Day. - On Saturday 28.1.2006
"Mad Pride World Holocaust Day" Unit, North Wing, Andrew Street,
Hackney, E8. 8 till late.
February 2006 The Department of Health to conclude Patient and
Public Involvement review by setting up a Patient and Public Involvement
"the first harm-minimisation conferences for healthcare workers
I organised in 2006 and 2007 [funded by Pavilion Publishing]."
"Our Future Conference" in Birmingham.
Network Planning Group
After the our Future Conference, a Network Planning Group met on
18.10.2006 (and other dates)
"IT'S THE ART OF TIMING AND LEADERSHIP" (Unapproved notes 3.5.2006)
Wednesday 16.3.2006 and Thursday 17.3.2006
Anniversary Conference at
Harrogate. "Feeling Used? - Making User Involvment Real". "What is service
user involvement? - Where does it happen? - Where should it happen?"
(Mind website) -
Conference flyer -
A Report on the SURF website
Report on the National Voices Forum webste -
Jan Wallcraft's Power
Point on Service User Participation in Clinical Trials -
30.3.2006 to 1.4.2006 British Psychological Association
Annual Conference, Cardiff. Dr
was awarded a Fellowship for, amongst other things, her work in "the
empowerment of mental health service users for two decades". (external link to the
pdf of cutting)
Anne-Laure Donskoy's first play, Le Blues du Serpsy,
performed in Paris. "Set in a virtual space and explored the fear of the
other. For this, I got a nurse to play the part of a service user and vice
Clare Allan's novel
20.4.2006 Meeting of the
Network Planning Group
(minutes taken by Janine Wood - not available)
"Limiting the Damage" by
Louise Pembroke in Mental Health Today
Spring 2006 "
Service User Research Group England - Mental Health
Newsletter 2 -
A Good-Practice Guide to Valuing, Respecting
and Supporting Service-User Activity
Directorate of Service-user Involvement
And, at about the same time:
Service-users Together. A guide for
, written by Anne Beales - Peter Beresford - Gil
Hitchon - Anneke Weston - and
1.5.2006 Catch-A-Fiya Network established on 1st May 2006 by
Afiya Trust. Its launch was on
3.5.2006 Meeting of the
Network Planning Group
Press release that
Peter Campbell was Mind's "Diamond Champion"
31.5.2006 Meeting of the
Network Planning Group
Speak Out Mental Health History Project - Birmingham - Project
Summer 2006 "
Service User Research Group England - Mental Health
Possibly mid-2006 that Working to Recovery Ltd, was established at 4 The
Beehives, Kimany Road, Wormit, Fife, Scotland, DD6 8PD by
and Karen Taylor. The first
international archive of its website is 19.1.2007
there was a lull - not sure for how long - But Working to
Recovery Ltd, now located in Fife,was again holding workshops on
these themes in 2006, but with some new topics and facilitators.
Spring and Summer workshops 2007 were: Planning for Recovery (Karen
Taylor), Risk Assessment and Management Planning (Mike Smith), Making
Recovery Happen (Ron Coleman and Karen Taylor) and Talking to Voices, Voice
Dialoguing (Dirk Corstens and Rufus May)."
(Anne Plumb email 3.9.2009)
July 2006 The Department of Health announced the replacement of
Patient and Public Involvement Forums with Local Involvement Networks
(LINks) - See
The National Association of LINks
26.8.2006 "A Bad Sign For Patient Democracy". First entry on the
Birmingham and Solihull Mental Health NHS Foundation Trust
4.9.2006 Social enterprise in primary and community care a
pamphlet by Patricia Hewitt, Secretary of State for Health, published by
the Social Enterprise Coalition.
(External link to download)
"Perhaps the most important benefit the third sector, and
social enterprise organisations in particular, can bring is a stronger
voice both for the users of services and the staff that deliver
of Age Conference in Leicester -
Joan Hughes history of the 1970s was given at this conference.
explains why Mind consider
2006 an anniversary and the ways in which he agrees.
6.9.2006 - 7.9.2006 - 8.9.2006
Manchester conference at which
The campaign for the abolition of the schizophrenia
was launched. - See
Asylum 2006 -
BBC 9.10.2006 -
Guardian 9.10.2007 -
BBC Manchester 15.10.2007 -
Monday 11,9.2006 First entry on anonymopus blog
Who Are They Really Working For?
A blog that openly questions who the UK's main Mental Health Charities are
really working for.
14.9.2006 First "World
External link to Press Release -
about September 2006
Richard Shrubb and
Penny Hayes ceased
SURG on a
Bedlam FM plan and decided to work Richard's media
consultancies into a business: DIO Media (DIO for Do It Ourselves)
DIO Media got signed its first contract in January 2007 and started its
24.6.2007 - See Bristol index
Clare Allan, a
novelist with a
history of mental illness, wrote an article
"Misplaced Pride" arguing that mental ill health is not
something to celebrate. The week after, she began a monthly column
"It's my life" for Society Guardian
September 2006 to August 2007
National Institute for Mental Health in England (NIMHE)
publications - See
"NIMHE's excellent involvement tools, Making a Real
were launched... just as the organisation itself was rendered impotent.
Instead of real involvement, we get empty rhetoric.
(Jan Wallcraft, February 2008)
September 2006 Good Practice Guidelines for involving mental
health service users and carers - 15 pages -
NIMHE Policy Valuing Involvement -
Strengthening Service User and Carer Involvement in NIMHE -
Policy for involving service users and carers -
Minimum Standards for Working with
Diverse Groups and Communities -
NIMHE Vison Signing off Valuing Involvement -
Strengthening Service User and Carer Involvement in
Policy and vision statement on the purpose
of involvement. -
Commissioning guidelines: Supporting involvement at a local level by
investing in service user and carer led groups -
Leadership Recommendations: Strengthening the support available to
people who become involved by making appropriate training available. -
Benefit Conditions & Systems
Relating to paid and voluntary service user and carer
involvement activity -
Payment and Reimbursement Policy Guidance -
9.10.2006 Social enterprise seeking pathfinders
9.10.2006 World Mental Health Day. The
Mad Hatters of Bath shared "experiences, creativity, alternative
views, spirituality, political awareness and the sheer exuberance of fluffy
insanity in the Abbey Church-yard, Bath".(The Great Escape. The journal
of contemporary insanity - issue 1, page 2
Two Decades of Change Conference Report
available online -
"Colin Gell, a mental
health service-user activist of many
years, approached the Centre of Excellence in Interdisciplinary
Mental Health (CEIMH) with the idea of hosting an event that
would celebrate 20 years of service-user involvement. He knew
that national Mind would be holding such an event but
that for a lot of service-users it was not always possible to travel
across country. On November 2nd 2006
(a network of
service-users, carers and academic allies) and CEIMH staff who
have themselves been on the receiving end of mental health
services, organised an event where service-users and their
supporters could come from across the West Midlands area and
exchange their experiences, history and hopes for the future."
Peter Campbell's history of the 1970s was given at this
10.11.2006 Launch event of Hearing Voices, Ireland. The
initiative was started in October 2006 by
Brian Hartnett. website
21.11.2006 First of four ESRC (Economic and Social
Research Council) funded conferences
(programme) - This one in London - next in
Manchester - next in
Nottingham - Final one in
Essex. Andrew Roberts was invited as a reward for running the
mental health history timeline (thank you). See also
BSA Med Soc Sociology of Mental Health Study Group 2006/2007
Conference paper 5:
Research in Mental Health:
Where do we go next? by
Lisa Haywood ceased
being vice-chair of
and left its council of management.
Haywood Consultancy set up, at some time.
Lisa Haywood is the "Senior Consultant" of Haywood Consultancy. The others
Kofi Sunu -
Jan Wallcraft -
Ed Van Hoorn
Winter 2006 "
Service User Research Group England - Mental Health
Winter Bulletin 2006 -
"Rethink Politics: Since 2007, Rethink has been training people
affected by mental illness on how to get involved in politics, at national
and local level. So far , we have trained over 200 people and
put people in touch with local politicians, who have attended events, been
questioned and listened to the experiences of people affected by mental
Teaching Mental Health, edited by Theo Stickley and
Thurstine Basset, argues that "Service user involvement is seen
as a key component of
contemporary mental health training and education". Two chapters are about
PINE Project and
Birmingham Mental Health History
National directory of service-user groups
put online by
Valuing Involvement - Strengthening Service User and
Carer Involvement in
NIMHE - Induction for New CSIP Employees
(External link to download a
CSIP (2007), Local Involvement Networks Explained, Care Services
Improvement Partnership, Department of Health, London
Early 2007 Personality Plus (P+) formed to promote a more positive
view of people with
(PD) by encouraging and
publicising their artistic creativity.
January 2007 A Guide to User-Focused Monitoring -
Setting up and running a project by Nutan Kotecha - Chandra Fowler -
Anne-Laure Donskoy - Peter Johnson - Torsten Shaw - and Karen
Other contributors: Julia von Hausenchild - Krys Farrell -
Graham Saxton - Shelley Welton - and Derek Williams.
Sainsbury Centre for Mental Health.
Catch-A-Fiya Network launched "whose primary purpose is to
establish and maintain contact with survivors from BME communities and
support them to learn, teach and grow (personal development)".
SCIE Research resource 02: Collection of examples of
service user and carer participation in systematic reviews.
By Sarah Carr and Esther Coren. -
developing partners (dp) set up
SANE's Service User Group established. See
22.3.2007 House of Commons Health Committee Third Report: Patient
and Public Involvement.
(external link to copy)
Ealing Gazette 30 March 2007
Foundation's Trustees report for the year ending
31.3.2007 said that The Foundation for People with Learning
Disabilities Directorate "could", "for the first time" formally draw on the
advice of groups consisting both of carers and of people with learning
disabilities in developing its priorities. The Patient and Public
Involvement Directorate would continue to support the development of the
national service user network in partnership with
Mental Health Foundation would help prepare VoX - the Scottish user network
- for independence.
(external source). The Foundation spent
almost £4 million pounds on "charitable ends" during the year.
announced it would close operations in early May.
"Hamlet Trust has been instrumental in developing
opportunities to promote user involvement in mental health and wellbeing in
20 countries over the last two decades". The website would also
close but the
ENUSP (European Network of Users and
Survivors of Psychiatry) website
to contain the contact details of many of Hamlet's partner
May 2007 The National Association of Patients' Forums established
to lobby for changes to the Local Government and Public Involvement in
Health Bill. It had an elected Steering Committee of 18 people. On
1.4.2008 it became The National Association of LINks
website online - promising an official launch for the
organisation in the autumn
6.6.2007 - 8.6.2007 World Psychiatric Association congress "Coercive
Treatment in Psychiatry: A Comprehensive Review" in Dresden, Germany. Judy
Chamberlin spoke for 35 minutes on 7.6.2007 -
external link to video of her talk
Richard Shrubb and
Penny Hayes launch the website of
Mike Cox started
Friday 13.7.2007 Start 2007 Great British Bed Push, organised by Mad
Pride, from a mental hospital in Bristol to Queen Square, Bath. "The bed
push ... had been organised by Rufus May, the eminent psychologist and
service user, to protest against oppressive psychiatry". (Chris Barchard,
Spring 2008 p.8) - See
Saturday 14.7.2007 Mad Hatters Party - Queen Square Bath. Organised
by Clare Crestani, previously vice-chair of
Perceptions Forum, with the
Mad Hatters of Bath, who are linked to Mad Pride. The Great
Escape. The journal of contemporary insanity - issue 1 had an
invitation to the party on the back cover. Clare distributed copies "of the
magazine... which the Mad Hatters had created which gives an often light-
hearted take on what it is to become subject to the mental health system.
She told me she had drawn inspiration for the form of this magazine from
... Perceptions (Chris Barchard,
Spring 2008 p.8)
"I formed a small charitable group with other friends here in Brighton
who have mental health and other disabilities around August 2007 but we did
not open the
Creative Cafe site
until November 2007 (Jill Goble)
Creative Cafe is set up and run by volunteers with mental health and other
our website members have their own webpage to express
their creativity, join groups and discussions and make new friends.
August 2007 "
Service User Research Group England - Mental Health
Research Network" - A newsletter that has not been archived. Also not
archived: "The raise! Review - Training Courses 2007"
Summer? 2007 Gateshead Mental Health Users Forum produced
Gateshead Mental Health Directory. The User Run and Self help
Services listed are: Agoraphobia Support - Blissful - Gateshead Mental
Health User Forum - Gateshead Obsessive Compulsive Support Group -
Launchpad - Manic Depressive Awareness North East - Manic Depressive
Fellowship - Silver Linings - Wallsend Self Help Group
Early August 2007 "A very enthusiastic group of
members met ... to share
thoughts and ideas and it is clear there
is a lot of history "out there" - in our own
memories and those of people we know,
who have used mental health services
over the years. We hope to find ways of
discovering this history and sharing it
with each other. Maybe one day, there
will be "Mad People's History" courses in
Edinburgh? Let's make it happen! - Anne O'Donnell"
Harm Reduction Guide to Coming Off Psychiatric Drugs
The Icarus Project, New York, USA
National Perceptions Forum celebrated its twenty-first year with
a special event when twenty-eight people gathered for an afternoon of
socialising, music, food, a DVD, an exhibition of cartoons and poetry, a
raffle and a rolling slideshow of art. All the creative work, including the
DVD, was the work of members.
4.9.2007 Death of Terence McLaughlin, editor of
"World Hearing Voices Day"
Oor Mad History ... a community history project, supported by NHS Lothian,
celebrating the history of the mental health service user movement in
Address: Oor Mad History, CAPS Independent Advocacy, 5 Cadzow Place,
Edinburgh, EH7 5SN. Phone: 0131 538 7177 - Fax: 0131 538 7215 -
1.10.2007 The Drill Hall.
CAPS (Consultaton and Advocacy Promotion Service) invited
Lothian user groups to meet
David Reville, a Canadian mental health service
user who has also been a politician and a lawyer and now
teaches a univeristy course in Mad People's History at Ryerson University
in Toronto. They were inspired by this visit to think about what
could be done here about Service User History. A Steering Group
successfully put a funding proposal to NHS Lothian and a Community History
Maclean) was recruited. Oor Mad History is based with the advocacy
CAPS (Consultaton and Advocacy Promotion Service). It will be a
paper based archive, supported by oral history interviews with key
activists, documenting the movement in
Lothian (Edinburgh, East Lothian, West Lothian and Mid Lothian).
19.10.2007 Psychological Therapies Network Meeting "Working together
with service users, carers and clinical researchers: Opportunities and
challenges". The speakers were
- Martina Kilbride -
Liz Pitt -
Nicky Lidbetter - Karina Lovell -
Diana Rose -
Jane Royle. (Download
draft programme -
6.11.2007 and 7.11.2007 Mind Conference in Poole,
Experience and innovation: working in partnership, gives the
National Survivor User Network a celebratory
North Tyne World Mental Health Day Press Release
F.E.E.L. - Friends of East End Loonies established by
Facebook site established autumn 2009 by Nathalie Fonnesu
"FEEL is an independent group created by service users, carers and
professionals that have been meeting up since November 2007. We meet
regularly every third monday of each month at the LARC Centre, 62 Fieldgate
Street, London E1 1ES with the aim of rising more awareness on the
"Psychiatry Cosh" and empower people in finding their best solutions in
managing their mental health/distress. Working together GREATER results can
be achieved". - Large meetings at Kingsley Hall: See 1.6.2009 - 30.10.2009 -
about November 2007 SURG The Service User Reference Group, made up
of representatives of service user/survivor groups
from Bristol, North Somerset, South Gloucestershire and Bath and North East
Somerset, issued its first newsletter (
Winter 2007/2008) - See
March 2008 leaflet and
Spring 2008 newsletter -
All the staff that make up the Service User Research Group for England
(SURGE), the service user arm of the UK Mental Health Research
Network (MHRN),' resigned at the beginning of
December. When they left they made a public statement of their reasons. See
December 2007 Involvement Matters -
An Investigation into Mental Health Service User Representation and
Involvement in East Anglia by Jane Dunleavy, University Campus Suffolk
About December 2007:
"Who's Caring" added to You Tube (Sussex Rockers "Say NO to
Mental Health Discrimination")
"In 2008, Rethink supported 70 people affected
by mental illness to come to Parliament
and meet Lord Darzi to ensure that the
community's voice was heard and influenced
the NHS Next Stage Review. Lord Darzi spoke to and listened to people's
experiences and three key priorities were
identified for the review." (Rethink's
Breaking the Silence - Creating a Civil Rights Movment in Mental
Jan Wallcraft explained in Mental Health Today why she had
resigned from the
Service User Research Network for England (SURGE) in
December 2007 -
Read it here.
Perceptions - The Magazine of the
National Voices Forum issue 29 includes a report on the
Mad Hatters Party by Chris Barchard.
March 2008 With a small grant from the
Hamlet Trust, The
employs Philip Ruthen to help develop Survivors' history.
Photographed signing the contract are (from left to right),
Frank Bangay, survivor poet and gig organiser - Mandy Chainey,
Together's Service User Directorate Admin Manager -
Peter Campbell, for many years Secretary of
Survivor's Speak Out, and also a noted poet - and Phil Ruthen,
the newly appointed group
researcher who is also a survivor poet.
Tuesday 1.4.2008 Conference at Essex University on Locating Mental
Health Social Movement Organisations - Final ESRC Seminar on Social Science
Approaches to the Study of Mental Health -
Our conference photograph shows (from left to right)
Helen Spandler holding Peter Barham's
book on Forgotten Lunatics of the Great War, Philip Ruthen holding
Stained Glass, poems from Survivors Poetry by Sally Richards,
Peter Barham holding Helen Spandler's book Asylum to Action, and
holding his book Recovery - An Alien Concept.
1.4.2008 The National Association of LINks Members (NALM)
launched on April 1st 2008 to coincide with the establishment by the
Local Involvement Networks. These bodies will monitor health
and social care across England and replace Patients' Forums.
"For the second time in five years, the DH has abolished PPI
organisations across the country and dislocated the monitoring of health
care by local people. NALM is concerned that the new, poorly-funded LINks
organisations could take years to recruit effective membership and
NALM is national, member-led organisation which will campaign for
patient and public involvement (PPI) and greater democracy in health and
social care services" (email received 3.4.2008)
Survivors History Group conference with historians - London. The
picture shows Joan Hughes and Helen Spandler discussing their articles in
Asylum, with Mark Cresswell in the foreground and Roger Lansdown in the
2.6.2008 Registration of Manchester Social Media Community Interest
Company 06607534: The Venture Centre 491 Mill Street... by
Paul Ripley and others. "specialises in facilitating hard to
reach individuals and groups to present promote and positively articulate
their views, often through the medium of Digital Video". "Paul Ripley, the
founder of MSM, has been working for
eight years training and producing videos with people recovering
from mental health problems, to create work which advocates their views and
issues." "The people MSM employ all have an extensive background in media
production, including Channel 4 and the BBC"
website - "Manchester Social Media, (formerly
the "Having a Voice" media project)"
Delivering Race Equality
(The Great Escape. The journal
of contemporary insanity - issue 3 was distributed in Bath on 14.7.2008
Monday 14.7.2008 To celebrate Mad Pride Day 2008,
The Mad Hatters of Bath and friends offered free normality
testing and biscuits in Bath City Centre.
"We found that despite a few outbreaks of
normality we were able to assure everybody they were declared globally free
of normality, and given a voucher to prove it.
Our resident video and editing technician has created a short video which
is posted on Youtube as
Mad Pride Day Bath 2008."
15.7.2008 Margaret Noddings and Terry Simpson closed the account of
the group she set up in 1987 - then called
Leeds Psychiatric Users Action Group
30.8.2008 First archive of the
Manchester Users Network -
Listed at a Manchester City Council Meeting 21.10.2010:
Alan Hartman, Chair of
the Manchester Users Network
Alan Valentine, Manchester Users Network
Paul Reed, Manchester Users Network
Lois Turner, Manchester Users Network
[Paul Reed is a survivor journalist who runs the Manchester Users
3.9.2008 Society Guardian
Mad pride and prejudices
3.9.2008 Society Guardian online
A Crusade for Dignity
Wednesday 10.9.2008 - Thursday 11.9.2008 - Friday 12.9.2008
Asylum! Conference and
Elizabeth Gaskell Campus
Manchester Metropolitan University
Conference co-organised by
Discourse Unit -
Hearing Voices Network and
Paranoia Network, with the
participating sponsorship of
Campaign Against the Schizophrenia
UCLAN Institute for Philosophy, Diversity and Mental Health, PCCS Books,
Intervoice and Working to Recovery.
Wednesday 10.9.2008 -
Survivors History Greater Manchester hosted an open meeting of the
Survivors History Group on Recording Our Histories.
Anne Plumb (right) suggested that history is better regarded as a
kaleidoscope than a microscope. Every time you look at it, you see a
Wednesday 10.9.2008 to Friday 12.9.2008
Survivors History Exhibition and Information Stall at the
Helen Spencer from Doncaster enjoys Frank Bangay's poems from the
Survivor Poetry part of our exhibition. Another part featured a
Greater Manchester leaflet and timeline and
Anne Plumb's library and archive. In the picture you can see
part of our Survivor Voices 1908-2008 timeline display and you can
download a copy of the timeline pamphlet. The yellow binder with
the spider's web logo contains
fragments from our archives.
Maria Fafalios, with Eugenie Georgaca, presented a session on
"Community care and user initiatives in Greece". One of the aims of the
session was to facilitate contact and networking between Greek and British
Maria suggested that we could make use of the
Kaleidoscopio - Social Enterprise website.
The Living with Psychiatric Medication Group has now been running in
Leicester since 2006. Grant Paton helps organise and plan the
The group was refused speakers from the Drug Companies. In
collaboration with the Arts Group, Brightsparks, it collected free drug
company mugs and pens and redecorated them to draw attention to what the
drug companies are doing.
Their conference workshop said DON'T MAKE A MUG
OUT OF ME!!
Phil Virden was particularly interested in a book by Patrck Holford
Karen Thorpe was reading. Karen, who came to our workhop from Wales,
happy to share it with him. In converstion we found out that Phil is the
Kenneth Wood's papers - Another important archive!
Brendan Stone, from Sheffield, was pleased to receive a Survivors
During the conference, Brendan showed his short film SCH!ZO as part of a
talk about the effects of reconceptualising 'mental illness' as common, if
sometimes extreme, human distress.
The Mad Hatters of Bath presented a workshop on Mad Pride
Grass Roots Actions at the Asylum conference. "We also showed our
new video which continues the theme of madness as a social issue, posted on
Youtube on 18.9.2008 as
Violent and Crazy (a response to a Violent Femmes
At the conclusion of the conference, we were exceedingly pleased to receive
a calling card from the mad hatters of Bath.
See 9.10.2006 -
2.10.2008: Friends, family and colleagues of
Tony Glynn, gathered together at the
CEIMH for the official naming of the Glynn Rooms in his
23.10.2008 Jayasree Kalathil spoke at the Survivors History Group.
She has established the website
survivor-research.com to highlight the perspectives of black and
minority ethnic service users and survivors. She told us about the
Afiya Trust (1997) and
Network (19.1.2007). In India, Jayasree came to the service
users movement from the women's movement. The link was some work she did on
women's narratives of madness (Hyderabad?). She mentioned that, in India,
the concept of "service users" always includes carers. Jayasree told us
about the Bapu Trust (Centre for Advancing Mental Health) and
Aaina - a mental health advocacy newsletter, that she founded in
Jayasree Kalathil has written a report for NSUN called "dancing to our
own tunes (March 2009).
The cover uses abstract photography by Eamer O'Keeffe.
Saturday 25.10.2008 25th Anniversary Celebration of the London Irish
Women's Centre included the launch of
Irish Lifelines: an anthology of
poetry by Irish women survivors in London, edited by
and published by the London Irish Women's Centre.
November 2008 OpenMind feature "Your history in your hands"
included the following picture history:
History showed a short clip from
Life after Mental Illness, the audio visual presentation
first made by members of Glasgow Link Clubs in 1984, using a video of the
presentation made by Thurstine Basset. Copies of this video are
available from the
Survivors History Group. Kirsten Maclean, of Oor Mad
"The film is a really important part of the history of the User Movement at
a UK, Scottish and Lothian level. Two of the people in the film went on to
be founding members of Survivors Speak Out. It was Survivors Speak Out
members who came up to early meetings in Edinburgh when the movement was
getting started here. Through these early meetings Lothians' first user
group was formed,
Awareness, in 1989."
Scottish archives are amongst the oldest in the movement -
dating back to the early 1970s - but the 1970s archives were deposited in
Wednesday 10.12.2008 Publication of
Time Together 2 with "The Story of
Saturday 13.12.2008 Death of Joan Hughes.
New website for the Brighton band
Heavy Load launched, featuring, amongst other things, it Stay Up Late
Campaign. The band appears to have been active for ten years. The Stay Up
Late Campaign toured the country in 2007.
"The anti recovery movement for failed....well just failed....."
group started on Facebook by Sara Stanton.
Monday 2.2.2009 Heavy snow in London cancelled Survivor History and
Survivor Researcher Network events
Thursday 19.2.2009 and Friday 20.2.2009
Asylum Conference - Canterbury "Recovery and Beyond"
This two day conference will
examine positive ways and constructive methods of coping with various
aspects of mental health problems. Themes will include working with self
harm, recovery, working with voices, working through paranoia, campaign to
abolish the schizophrenia label, working with clients who have experienced
childhood sexual abuse, coming off psychiatric medication, understanding
dissociation, thriving, personal experience of recovery
The conference will explore how people can maintain recovery and move
forward and thrive. It will also be the launch of the International
Paranoia Network with the long term aim to set up and develop a respite
centre in Canterbury
Monday 2.3.2009 afternoon:
Survivor History Group at Together: To include a discussion, led by Joanna
Moncrieff about her proposed research describing the use of Woodside Villa
in the grounds of
Warley Hospital, Brentwood for long-term rehabilitation of the
last Warley patients
Issue one - of Service Users in Research Newsletter [daughter
of SURGE newsletter]
Joe Kelly started
24.3.2009 Launch of "Service Users in Research" (formerly SURGE) -
launch agenda -
29.3.2009 A date given for
Camden Mental Health Consortium's contract with
Camden Council and Primary Care Trust for the provision of a user
involvement service coming to an end. (It appears to have continued until
the autumn). I was not renewed.
Friday 3.4.2009 Whose Voice? Narratives in the history of health
and social care. Health History West annual conference at
Glenside Campus, Faculty of Health and Life Sciences, University of the
West of England, Bristol.
The 2008 review of the National Health Service by Lord Darzi has been
described as a 'once in a generation opportunity' to effect change. The aim
of this conference is to consider historical narratives of health and
social care from providers, practitioners and consumers across several
generations. The conference seeks to encourage papers from all periods and
places. To this purpose narratives will encompass a variety of data
including written, oral and audiovisual material. This will enable
participants to consider the experiences of health and social care before
and after the inception of the post 1945 Welfare State.
Abstracts of no more than 300 words were (deadline 30.11.2008) invited
under the following broad themes:
narratives of service providers
narratives of practitioners
narratives of consumers
narratives from locations of health and social care
sources and methodology in researching the narratives of health and
18.4.2009 Bobby Baker Peas, Placards and Protests
Wellcome Collection, London -
CRITICAL PERSPECTIVES ON USER INVOLVEMENT CONFERENCE
University of Brighton
This one day conference is an opportunity to take a critical look at the
current state of 'user involvement'.
The right to be heard and co-production (Rachel Hurst)
Including a history of disabled people's struggle to be heard and then
looking at how governments and statutory authorities implement - or do not
implement - this involvement. Will argue the need for users to
make alliances with services providers - alliances that are based on co-
production, not professionals on top.
Out in the field, inside in the
classroom: older women's involvement in research for policy and
practice (Lorna Warren and Judy Robinson) Giving reasons for and
approaches to older people's
involvement in research before looking at two examples of researching
together with older women. Considering practical and ethical issues
relating to older women's involvement in research. Raising questions about
knowledge which comes from older people's experience as service users and
its relationship to knowledge generated by more traditional approaches to
After lunch speaker
The British mental health users' movement 1970-2000
Tracing the history of the British mental health users'/survivors' movement
between 1970 and 2000. It will reflect upon the various problems
encountered by the movement and the dynamics which have shaped its
Survivors History Group will be sharing a workshop with Rethink on the
Agents of knowledge - The expression 'agents of knowledge' is one
used to suggest the possession of a knowledge that originates through
living an experience or experiences. It is a knowledge that has originated
from direct experience. Has such a knowledge influenced or challenged
conventional 'expert' knowledges?
Survivors History Group: 'Reclaiming our history; The importance of
histories that are studied, archived and written by the participants'
Rethink 'Growing knowledge rooted in lived experience'
Survivors History group will organise discussion around five points
1) Is it important (or how important is it) for service users to be
in the recording, writing and discussion of the history of service user
2) How is the history of service user involvement relevant to a critical
assessment of user involvement? Can we learn from history?
3) What comparisons can be made between the history of mental health
users and other groups of service users?
4) How much does the involvement of mental health service users owe to
of solidarity and how much to "anti-psychiatry"? Is it a crusade for
dignity motivated by ideals of citizenship and participation or another way
of "contesting psychiatry"?
5) What are the pros and cons of academics writing the history of action by
Other themes at the conference are:
Margins to mainstream - With its beginnings in radical activism, service
user involvement has become a mainstream activity in many different
settings. What are the consequences of this 'acceptance' and what may this
mean for all involved?
Motivations and expectations - Should people always have to get involved?
For those choosing to be involved, what are their reasons? What is
involvement intended to achieve? And are expectations met?
Nothing about us without us - In the 21st Century is service user
involvement able to challenge the status quo, resist oppression, and stand-
up for social justice?
Impact and outcomes - Has service user involvement made a difference to
services, research, how professionals practice, and to service users'
Our lives, our research
(Val Williams and Mouse England) About disabled people doing their own
research, and working with others to carry out 'inclusive research'. We
will look at examples of the way people with learning disabilities have had
a voice and a role to play at different stages of the
research process. Mouse England will talk about her own role in research
projects; about making priorities for research; about advising research
projects; and about being paid
to carry out research as part of a team. We will particularly highlight the
benefits and tensions of inclusive research.
early May 2009 website of
Recovery In-Sight Centre. A social enterprise based in
Hertfordshire led by
Heather Straughan. Team:
Mary Nettle, Rosie Davies, David Armes, Phil Ruthen, Ila Bell,
Gwyneth Marmaras, Laurie Davidson, David Serota, Linda Stoneman, Laura
Francis, Ruth Redd, Natalya Shieff, Paul Maher, Benit Maru, Karen Thomas
(All of whom are "academically trained mental health service users and
people who care for service users". Glenn Roberts, Mike Slade and Ruth
Badger are professional advisors.
Issue two of
Service Users in Research Newsletter
Summer 2009 The board of directors of
Borderline UK and
Personality Plus decided to merge to improve the valuable
services, information, training and events. By becoming one constituted
organisation we also felt it would be easier for users, carers and
professionals to join. The new website,
http://www.emergenceplus.org.uk, now hosts all the information
previously available on the Borderline UK and Personality Plus sites. But
we have also added new, exciting sections as well a member only area.
Monday 1.6.2009 F.E.E.L. event "Humane Therapy Not Drug
Tyranny - A meeting to discuss the abuses within the psychiatric
system, what a humane asylum [would] be like and how do we get from one to
the other. Rufus May, who has appeared on TV in the documentary
called "The Doctor Who Hears Voices", will help to start the discussion.
Bring your strategies". Kingsley Hall. Over 80 people attended, and
Frank Bangay provided poetry.
Researching in Mental Health: Sociological and
Service User/Survivor Perspectives
A symbolic interactionist approach to mental health outreach', Jim Roe
and Hugh Middleton, University of Nottingham. See
"Using personal experiences to understand other people's mental health
recovery", S. Ajayi, J. Billsborough, T. Bowyer, P. Brown, A. Faulkner, A.
Hicks, J. Larsen, P. Mailey, R. Sayers, R. Smith; Rethink. See
Discussion of the seminar series and ways forward.
Newsletter issued by
August and September 2009
Summer Schools of Activism and Advocacy organised by Sara
Stanton, Training and Advocacy Manager with the Service User Involvement
Directorate at Together. - FREE TRAINING FOR PEOPLE WITH PERSONAL
OF MENTAL DISTRESS / USING MENTAL HEALTH SERVICES -
"There here is democratic consensus between users/survivors on very
few topics, but most certainly two immediately spring to mind - the MHA
campaigned against the introduction of
Community Treatment Orders and now with
to disability benefits. Both these topics have overwhelming
support." Louise Pembroke email 19.8.2009
Frank Bangay and Sophie Mirrel performed at
The CD Songs, Poems and Payers, published August 2009, features the
Crazy Clock in Battersea Park - removed 1966 - that Frank knew as a child.
Sophie began performing with Frank in 2005. She sings on tracks one:
Morning Prayer - seven: Dear Lord - 12: Travelling Prayer - 13: He was
a Poet - and 16: Evening Prayer.
Wednesday 9.9.2009 Mental Health Training and Education conference.
Hendon Campus, Middlesex University.
Themes: Reflecting on the education
and training outcomes of the mental health modernisation agenda - successes
and setbacks - Taking stock of where we find ourselves today
- Looking to the future for mental health education and training in
2009 and beyond. Thursday 10.9.2009 Second day of Mental Health
Wednesday's events included a Survivors History Group led workshop - from 2
pm to 3.15 pm - on "Teaching and learning about our history" -
- The teaching and learning tools distiibuted
Abolish Borderline Personality Disorder Label (CABL)
survivor led campaign is born" (Email from Louise Pembroke Wednesday
16.9.2009) - See
Friday 30.10.2009 F.E.E.L. event. Humane Therapy - Not Drug
Tyranny - A meeting to discuss the abuses within the psychiatric
system, what would a humane asylum be like and how do we get from one to
the other? Dr Bob Johnson, author of Unsafe at any Dose on
psychiatric drugs. (See
website). Speakers from Tower Hamlets African and Caribbean
Mental Health Organisation
(THACMHO) who believe the best way to
achieve mental health is through a strong, vibrant and caring community.
Hall. 6.30 - Doors open for 7pm start.
4.11.2009 and 5.11.2009
"Recovery a Human Right" Conference in Cork.
Jan Wallcraft to speak on
"Mental health research -
Is involvement possible or should we
do it ourselves?"
Service users have argued repeatedly that involvement must lead to
genuine change. Yet much mental health research is based on
traditional assumptions and methodologies which we were not
involved in creating, and cannot effectively challenge. We are now
invited to get involved, but are we wasting our time? What has been
the response of service users to this dilemma?
This presentation will give some examples of different responses-
from working one's way to the top of the professional tree at one
extreme, to going off and doing radically alternative research at the
other, and summarise the value of different approaches, setting out for
debate some thoughts about the likelihood of making a real difference
to the underlying biomedical agenda.
The latest in activism and community news
ENUSP, the European Network of
(ex)Users and Survivors of Psychiatry
How can we join forces across Europe?
The battle to ban forced electroshock in Ireland
Survivor of psychiatry confronts EU suicide conference
Why the UN disability rights convention matters
Reviews, profiles, art and a call for YOUR input
March 2010 Relaunch of
First issue is a special issue on paranoia.
Paranoia Defined by Professor Alec Jenner
Herstory of Madness by Eleanor Longden
Notes on Paranoia by Peter H. Donnelly
The Panic Diaries by Jacqui Orr reviewed by Paul Henderson
My Experience of Paranoia by
Explaining Paranoia: Psychoanalysis vs Psychiatry by Phil Virden
Rethinking 'Paranoia' by Dave Harper
Paranoia and Recovery by Angelina Cosgrove
Human Approaches to Paranoia by Peter Bullimore
The Paranoia Group by Peter Bullimore
Psychology and the War on Terror (2): Psychological Warfare and
Paranoia by Dave Harper
Not as scary as it looks! - Click the cover for friendly information
Asylum's Manchester launch event:
Wednesday 3.3.2010 6.00-7.30
Lecture Theatre T0.03, MMU John
Dalton Building, Oxford Road (opposite the BBC).
Will include discussion about the history
and revival of Asylum, about the paranoia special issue, and about the
formation of the Asylum supporter network. There will be guest speakers
active in the struggle for democratic psychiatry.
Asylum's London launch event:
Monday 15.3.2010 6.00-8.00pm
University of East London, Stratford campus
Room AE 1.01 (in the Arthur Edwards building)
Jacqui Dillon (Chair of the Hearing Voices Network, and member of
Dave Harper (member of editorial collective)
Dr Joanna Moncrieff (author of The Myth of the Chemical Cure)
Gail Hornstein (author of Agnes' Jacket: A psychologist's search for
the meanings of madness)
Admission: email Dave Harper
A Pageant of Survivor History -
Mental patients in poetry, story and song from the 18th to 21st
Tower Hamlets' Africans in the 18th century - Voices from the asylums -
Mary Barnes and Kingsley Hall - Eric Irwin and Mental Patients Union -
Frank Bangay of Campaign Against Psychiatric Oppression - Peter Campbell of
Survivors Speak Out - David Kessel of Hackney Union of Mental Patients -
Sophie Mirrell from Core Arts - Irish women survivors in London.
Followed by an open mike session for people to talk about their own
experiences. Organised jointly with Survivors History Group.
Powis Rd, London, E3 3HJ (map) - 6.30 - Doors open for 7pm start.
Online version of Service User and Carer Involvement in
Health and Social Care Education, by Michael McKeown, Lisa Malihi-Shoja
and Soo Downe, of
Comensus, published. Print version published July
2010. Book "launched" at Preston in
Comensus project co-ordinate user and carer involvement in the
the University of Central lancashire. It is user and carer run.
Wednesday 12.5.2010 evening:
Survivor Researcher Seminar Birmingham:
Collaborative research in
Damien Kavanagh, Martin Daly, Moira Harper,
Gavin Davidson and Jim Campbell spoke on "Using peer researchers to explore
service user and carer views on compulsory admission to hospital".
Three patient and carer advocates and
two academics were involved in a qualitative study designed to elicit the
views of six service users and six carers covering three phases associated
with compulsory admission: initial assessment leading to hospitalization;
care and treatment in hospital and, finally, discharge processes.
The findings indicate that service
providers are not attentive enough to key process (information giving,
communication, therapeutic relationships) that would improve the
experiences and human rights of service users and carers.
An additional outcome of the study was a reflexive account of how the
research process affected researchers' views about compulsory care and
Download flyer -
28.6.2010 to 30.6.2010 Real People: The Self in Mental
Health and Social Care 13th International Conference, International
Network for Philosophy and Psychiatry (INPP) - Manchester, UK -
The International School for Communities, Rights and Inclusion (ISCRI),
University of Central Lancashire (UCLan) in association with European
Network of (ex-) Users and Survivors of Psychiatry (ENUSP) -
"I heard that Szasz didn't go down very well with the audience
stroppy and rude when questioned.
Apparently, he said he didn't believe in "welfarism" and that people can
make up psychiatric conditions to avoid working and shouldn't drain the
taxpayers. He said that the disability movement is a "parody of itself"
that work is the answer. He didn't wish to discuss iatrogenic damage
"That about sums it up, Lou. As to rudeness - and arrogance -
Lehmann began a question by acknowledging that Szasz had been
influential in Germany - a visit had led to the introduction of
Advance Directives but, for some reason, Szasz was having none of it.
He constantly and loudly interupted Peter with objections I couldn't
make sense of. Anne."
Anne-Laure Donskoy's second play, Socrates' Café
performed at the conference. "About the silence
surrounding what has been done to psychiatric patients for centuries, other
approaches, the user movement etc. and in which I take psychiatry
and philosophers to task...".
is loosely based on
Montesquieu's Persian Letters, which is a
satirical and funny exchange of letters between travelling Persians in the
Friday 30.7.2010 F.E.E.L. event.
Joanna Moncrieff (psychiatrist) speaks on The Myth of the Chemical
Cure. Kingsley Hall. 6.30 - Doors open for 7pm start. -
Read the report
Saturday 24.7.2010 the
Mad Pride "public meeting to discuss and
plan direct action to oppose and condemn government's
attack on welfare benefits for those labelled mentally ill or
otherwise disabled" at
Pogo Cafe, 76 Clarence Road, Hackney, London, E5 8HB at
Edna Conlan MBE died. Funeral 10.9.2010, Crown Hill Crematorium.
Milton Keynes 11am.
Survivor Researcher Seminar Birmingham: Affective
community space and Everyday Risk -
Gerry Bennison, Dawn Talbot and Jo Warner
This research evolved from discussions between Dawn Talbot and Gerry
Bennison, who are service user consultants, and Jo Warner, an academic at
Kent University. Gerry and Dawn had identified a cafe that they use as an
important focus for many local people, including those who are regular
users of health and social care services. Using qualitative interviews the
findings identifies a number of important themes relating to social
relationships, social space, crisis and risk. In addition to presenting the
study and its findings the co-researchers will reflect on how their
relationships and identities evolved over time. -
This is the seminar postponed from Wednesday 17.3.2010 evening:
28.9.2010 to 1.10.2010 a draft statement was formulated by the
European Network of Users
and Survivors in Psychiatry at the
general assembly in Thessaloniki
September 2010 calling for
Truth and Reconciliation in Psychiatry,
demanding an apology and reparations for the damage done by psychiatry
4.10.2010 Self-harm and borderline personality disorder
Exploring practice, controversy and common ground.
Oor Mad History launch of book and exhibition "Oor Mad History -
A Community History of the Lothian Mental Health Service User Movement".
From Mark at Mad Pride on 9.10.2010
This is to announce a survivor Anti-cuts Demo to be held at Speakers
corner, Hyde Park (Marble Arch) from 1.00pm on Oct 26th 2010. Meet at
the cafe at the corner of the park just there. A little further away
is Hyde Park Corner tube - and it is a nice walk up the park - following
Park Lane to Marble Arch.
This will be our first demo for several years, but as I think you will
agree the issue of Cuts is so terrifying that we could not stand by and
So let's show 'em we ain't gonna take this lying down.
All survivors (and allies) are welcome to join up and post on the new
Forum at http://madpride.org.uk/forum/
And do come on the day if you can!
More details will be at
Do join up and post.
Enquiries: 07542 459321 07766 124472
Survivor Resistance Network
First meeting called as the "Self Defence Coalition" on 2.12.2010
Statement of Demands circulated 7.1.2011
First meeting as Survivor Resistance Network Wednesday 12.1.2011.
Mental Health Resistance Network
The Mental Health Resistance Network
Post by Mark Roberts Friday 22.4.2011:
The Mental Health Resistance Network is a new group which came out of the
action group working on the Mad Pride October 2010 demo. It does not have
any borders but is for the moment mainly centred around South and East
It is very closely linked with Mad Pride UK and the South East London cell
and other organizations like Creative Routes, Cooltan Arts and Southwark
MIND. And it works alongside anti-cuts groups from the Disabled People's
movement as a whole.
Members are organizing and attending demos which in Spring 2011 are coming
up thick and fast. The Network is also looking at challenging the Work
Capability Assessments via meetings with politicians and perhaps through
There will be a website soon at
January 2011: From Vicki Ensor, Policy and Campaigns Assistant, Mind.
"We have been doing a lot of work on the Work Capability
Assessment (as well as other benefits issues) at Mind and we have included
some tips for people when taking the test on the website.
[Follow this link]. Best of luck with the Survivor Resistance
Abstract - possible 20 minute session at
"Health Rights in
Global Historical Perspective" Conference
Human rights and mental health: A Survivors history perspective.
Users and Survivors of psychiatry, both historically and today,
routinely have taken-for-granted human rights removed from them through the
deprivation of their liberty and enforced psychiatric treatment.
At the end of the twentieth century, the
Richardson Report (1999) concluded that
it was unfair to discriminate against people with a diagnosis of mental
illness and suggested an Act for all those who refused treatment. Instead
of this, the Government chose to amend the previous Act and introduce a
Mental Capacity Act which includes an amendment on the
liberty. The Code of Practice for the Act contains a statement of guiding
principles which are a starting point for understanding the current picture
of human rights in mental health.
Mary Nettle is a
User/Survivor of mental health services. She has
been active in the Survivors' movement since
1987 and is also a
Mental Health Commissioner, inspecting institutions which
deprive people of their
liberty under the
Mental Health Act 1983. From this dual perspective, she
believes that our human rights can only be protected if services and
Users/Survivors themselves are aware that they have rights and know how to
use them. Yet to do this requires a knowledge of complex and diverse
documents and agencies such as the
Fundamental Rights Agency in Vienna, the
United Nations Convention on the Rights of People with
Disabilities and the
Equality Act (2010). In her proposed talk, she will describe
these agencies and documents can be used by us to protect our fragile human
Wednesday 30.3.2011 A London meeting of the Survivors History Group.
Tuesday 12.4.2011 - 9am to beyond 4pm Unsettling Relations: Mad
Activism and Academia An all day seminar at the University of Central
Speakers and participants include survivors. Main
David Reville and
Kathryn Church from Ryerson University in Toronto, Canada.
Anne Plumb from the Survivors History Group and
William Park from the Preston Mental Health Service User Forum.
Demand for places has forced the organisers to move the Preston meeting to
a larger hall. It will now take place in the Salvation Army Building,
Harrington Street, which is next to the University of Central Lancashire
Harrington Car Park - But there is very little parking available.
4pm Comensus book
Thursday 14.4.2011 - 5 to 6.30pm
Centre for the History of Science, Technology and Medicine at
Manchester University. Mental Health Group meeting on "Survivors
Histories". An evening of discussion about the construction of survivor
histories in Canada, Scotland, Lancashire, London and elsewhere. Andrew
Roberts will provide an
online presentation placing the contributions of
David Reville (Canada) in context and leads up to an
analysis of what the Survivor History Group does, finishing with a
very brief introduction to the recent pathbreaking work of the
Oor Mad History project in Scotland. Val Harrington (organiser)
"The Centre for the
History of Science, Technology and Medicine which is on second floor
of the Simon Building, University of Manchester, Brunswick Street. At the
moment I am not 100% sure which room its going to be in (it will
depend whether the building works going on on the corridor above will
be finished for the day) so I am suggesting people come to room 2.58
where they can pick up refreshments (available from about 4.45) and
I will put up a notice and directions to the room. The corridor is more
or less opposite you when you come out of the lift."
"Patch has a Bath" video. Patch is the patron saint (or
something like that) of the Survivors History Group.
Spring 2011 Newsletter issued by
Anne-Laure Donskoy's Le Café de Socrate performed
2.9.2011 and 3.9.2011 "Searching for a Rose Garden. Fostering Real
Alternatives to Psychiatry International Conference". At: Tagungshaus Alte
Feuerwache, Axel-Springer-Straße 40-41 10969 Berlin. The highlight of
a series of events this year called "Survivor Control: The Rights and Self-
help Opportunities of People with Psychiatric Experience" organized by the
Berlin Association for Protection against Psychiatric Violence. "Searching
for a Rose Garden will introduce and explore alternatives to psychiatry
that build upon survivors? knowledge".
Critical perspectives on user
involvement, edited by Marian Barnes and Phil Cotterell, to
posting for the Survivors History Group
A posting by
Mike Cox for the
Survivors History Group
27.9.2012 The launch of the first issue of
The Newhaven Journeyman, edited by
F.E.E.L. event. with three speakers:
Joe Kelly, West London activist, on "a new vision of disability"
Peter Barham, author
Schizophrenia and Human Values on "some schizophrenic
David Skull, an organiser of the
Mental Health Resistance Network
Kingsley Hall. 6.30 - Doors open for 7pm start
December 2012 A Village Called Pumpkin is a story for
aged between four and twelve.
It is the first children's story book to be published by
More information to follow
About the Author
I have heard voices for many years, leading me to receive a diagnosis of
chronic schizophrenia. I spent a decade in psychiatric services where no-
one paid any attention to the content of my voices. The voices were always
critical and abusive and never gave me any peace. Through the support of a
very good occupational therapist Sally Bramley and the Hearing Voices
Network I started to gain more insight into the voices and the meaning
behind them. Though they still talked to me in a very critical and angry
way, I understood what they were trying to tell me. I learned to look
beyond the metaphor. Although it was still difficult to function with up to
40 voices at a time, my life started to have more meaning, this enabled me
to start teaching professionals and other people the true meaning behind
A Village Called Pumpkin
This book was written in association with my voices, without their
influence I would never have had the ideas and creativity to create the
characters and storylines. Whilst writing the book the characters would
speak to me and ask what role they would be playing. Whilst writing one
chapter I put in too many characters and it was like a film set all talking
to me demanding a speaking part, even up to the point the vet in one of the
chapters refused to carry out his duties until I gave him a line. I would
often say out loud "no you cannot have another line". My partner Linda
look across the room and smile as she knew I was talking to the characters
Chapter one: Sociology and survivor research by
short history - little more than twenty years -
survivor research has had a number of watershed moments. These include the
publication of the directly challenging Have We Got Views For You in
(Beeforth et al) to the development of the first national
survivor-controlled research programmes, User Focussed Monitoring
2001) and Strategies for Living
(Faulkner and Layzell, 2000) in
1990s. More recently, the publication of the survivor edited
This is Survivor Research
2009 demonstrated just how far survivor research has travelled.
A seminar series at the British Library also in 2009 - from which this book
has emerged - represents another key milestone.
MOVEMENTS IN THE 1970S - BY
JOAN HUGHES -