WELCOME TO ALL FELLOW CAMPAIGNERS for DISABILITY RIGHTS - a pan disability blog connecting my work with, EQUAL LIVES, the National Survivor User Network (NSUN) and the Survivor History Group.

Protest, Norwich Job Centre

Protest, Norwich Job Centre
Fatso Gets Militant!

Thursday, 19 January 2017


From Andrew Roberts
telephone: 020 8 986 5251
mobile 07505527755
home address: 177 Glenarm Road, London, E5 ONB

The following meetings have been booked for 2017. All meetings will
be at  Together, 12 Old Street, London,  EC1V 9BE with food and drink
to reward those who come. Everyone is very welcome at meetings of the
Survivor History Group.

Wednesday 25.1.2017 Survivors History Group 1pm Together
Wednesday 29.3.2017 Survivors History Group 1pm Together
Wednesday 31.5.2017 Survivors History Group 1pm Together
Wednesday 26.7.2017 Survivors History Group 1pm Together
Wednesday 27.9.2017 Survivors History Group 1pm Together
Wednesday 29.11.2017 Survivors History Group 1pm Together

Our new meetings group will buy the food and set out the room ready
for 1pm. Copies of Asylum Magazine will be available for purchase at
a reduced price. From 1pm we will get to know one another and then
the meeting will probably be in two parts, with a refreshments break.
We should finish and leave Together before 5pm. You are welcome to
come for all or part of the meeting. If you know (or think) you will
be coming, it helps the planning if you let me know.

We are altering the arrangements for payments to those who claim
expenses. Please email me if you may be claiming.

TOPICS - NSUN (survivor? user network) history - SUMP and MPU
(Scotland and England early 1970s) - The history and future of
Welfare and participation - Rose Gardens: Alternative dreams and
realities - The survivor heritage in archives, websites, plaques,
museums and art collections - Your suggestions.

Topics can be put on our agenda at the start of meetings, but we are
also drawing up a list of topics in advance for the year. A group of
people from different parts of England (and possibly other places)
will be helping with this. Let me know if you have suggestions.

The first topic on Wednesday 25.1.2017 will be the history (and
future) of NSUN, the English "network for mental health" which
describes itself as an "independent, service-user-led charity that
connects people with experience of mental health issues to give us a
stronger voice in shaping policy and services". See its website:


In 2006 a 'Doing it for ourselves´ service user conference in
Birmingham developed the idea a National Survivor User Network
(NSUN), leading to funding in 2007 and becoming a fully independent
organisation in May 2010. What has it done? What can it do in the
future? How does it relate to the survivor movement in England and
throughout the world?

Our discussions will be led by Stephanie TaylorKing, who is the web
editor and information officer (part time) at NSUN. Stephanie will be
helping to improve our own web history of NSUN:


In the second part of the meeting we will move from England to
Scotland.  Using our archives, Mark Gallagher of the University of
Glasgow has written an article in "History of Psychiatry" called
"From asylum to action in Scotland: the emergence of the Scottish
Union of Mental Patients, 1971-2".  Andrew will introduce this
article, which is suggested as a discussion topic for later in the
year. The  following extract from is conclusion, comparing SUMP and
the Mental Patients Union, gives some idea of its significance:

"The cases of SUMP and MPU manifest in microcosm a significant
difference in deinstitutionalization between Scotland and the rest of
the UK. When the MPU emerged at Paddington in 1973, the resident
population of mental hospitals in Scotland was 370 per 100,000,
compared with an English occupancy rate of 190 (Martin, 1984: 68).
SUMP emerged from an old asylum, whereas MPU was formed at a day
hospital. As Martin (1984: 70) observed, `day hospital facilities
were unknown in Scotland before the mid-seventies´. Despite having
played a pioneering role over the previous century, with the
introduction of boarding-out and open-door policies, Scottish mental
hospitals in the 1970s were overcrowded and retained large numbers of
long-term residents. A decade after the UK Health Minister Enoch
Powell announced in 1961 that `for the great majority of these
establishments there is no future appropriate use´, Scotland remained
stubbornly yoked to traditional forms of institutional provision (see
Long, this issue). It is perhaps not surprising that the first mental
patients´ union in the UK emerged from an old asylum in Scotland, at
a time when a diminished role was envisaged for such institutions in
the UK and throughout the West".

Other topics for 2017, already agreed, include

The history and future of Welfare and participation - A discussion
based on Peter Beresford's book All Our Welfare - Towards
participatory social policy, published in 2016. Andy Brooker, Peter
Campbell and Peter Barham, and others, are reading an discussing this
in preparation.

Rose Gardens: Alternative dreams and realities - A discussion based
on  Searching for a Rose Garden: challenging psychiatry, fostering
Mad Studies - a collection of articles edited by Jasna Russo and
Angela Sweeney. We need volunteers to read and prepare.

The survivor heritage in archives, websites, plaques, museums and art
collections - It is possible that this discussion could be led by
Sarah Chaney, who has been very actively promoting the issues, if a
suitable date can be found. Sarah has drafted an article called
""Genus: Patient (species: voluntary)": Where is the Survivor
Archive?", which may be published as a blog by The Wellcome Library.

I thought last year was a very interesting one at the London meetings
of the Survivor History Group. Good records were kept by Peter
McGeary and it would be good if Andrew Roberts would use these to
share the discussions with others. As I have not done so yet, plans
are being made for the 2017 meetings that could mean NSUN
distributing summaries of the meetings.

One of the  most important discussions in 2016 was how people
surviving different things relate to one another. This focussed, in
particular on how disabilities of body, communication and learning
relate to mental distress. It also included discussion of alcohol.
Peter Barham has written a review of "Madness, Distress and the
Politics of Disablement", edited by Helen Spandler, Jill Anderson and
Bob Sapey, for the London School of Economics Review of Books, which
is "based very much on our discussion at the last Survivor History
Group meeting. You can read it at:


Thank you for everyone who has offered to help with making the
Survivor History Group more of a team effort. We are working through
the offers and ideas, and even I am hopeful!

Comments on this outline of our plans will be very welcome - We need
your suggestions.

Best wishes, Andrew

Friday, 11 November 2016


The UK government recently published its long-awaited proposals about changes to the existing long-term out of work sickness/disability benefits system.  The proposals are predicated on the idea that 'too many' people are 'languishing' on long-term benefits and their health would be improved if they entered paid work.

There is a consultation period running until 17th February on the proposals.  It's very important that consultation responses home in on the likely changes which the government intends, rather than on the storyline that the Department for Work and Pensions ran with in the run up to the release of the Green Paper. 

I've written a blogpost which attempts to expose the fallacious unilinear causal relationship that is being claimed between health and work and which also attempts to deconstruct exactly what the DWP is proposing.  I hope this might help others to respond to the consultation.


We live in very difficult times...


Wednesday, 9 November 2016

Important notice from the Survivors Group

From Andrew Roberts
telephone: 020 8 986 5251
mobile 07505527755
home address: 177 Glenarm Road, London, E5 ONB

In January 2015 we had to cancel a meeting of the Survivors History
Group. This followed a difficult period working out how we could
mange as a group, raising money, and monitoring accounts, for

Careful thought and discussion followed and, as a result, we
separated the groups administrative issues from the general meetings
(they are dealt with by a small finance group) and prepared a series
of meetings with substantial discussions of themes (Mary Barnes and
creativity, for example) and books. These have been much appreciated,
but although records have been kept of the discussions, these have
not been adequately reported to readers of this email newsletter.
This is is one of the many things on which I have fallen behind.

The meetings we fully planned finished in September. Because of the
personal problems of members, we have decided to suspend future
meetings whilst we seek people to plan and run them. Andy Brooker has
suggested that we put together a small group of people in the London
area who could take on collective responsibility for planning and
organising some London meetings. Together have said they will be
happy to continue providing our free meeting space when we are ready
to resume.

Those of us who currently organise the meetings will carry on. What
we seek is other people to join us so that routine tasks like being
responsible for a meeting, welcoming people, making hot drinks and
(possibly) providing refreshments, are shared. If you think you could
help with this, please let me know. Once we have a few volunteers, we
can discuss planning a London programme for 2017.

Best wishes, Andrew

Wednesday, 24 August 2016


The Norfolk Health 'Runaround?'

A question I have to ask is: Does the NHS in Norfolk have deliberate devious policies to prevent or hamper access to some services? The way I'm being treated here strongly suggests that is so.

“A personal health budget is an amount of money to support a person’s health and wellbeing needs, planned and agreed between the person and their local NHS team. The vision for personal health budgets is to enable people with long-term conditions and disabilities to have greater choice, flexibility and control over the health care and support they receive...
Regulations 201317 set out CCGs’ legal duties relating to NHS CHC and CC rights and personal health budgets. These include duties to publicise and promote their availability, to provide information, advice and support, to consider requests for personal health budgets and to ensure they have the systems and processes in place to be able to make this provision.” (NHS England, 'Guidance on the “right to have” a Personal Health Budget in Adult NHS Continuing Healthcare,' September 2014)

At the beginning of July 2016 I wrote to the South Norfolk Community Commissioning Group (CCG) asking how I should apply for a Personal Health Budget. On 22nd July I had e mail from Peter Witney, PHB Team Manager, NEL (North and East London) Commissioning Support Unit. This said: “If you are not in receipt of NHS Continuing Health Care... then currently you are not eligible for a Personal Health Budget. You would first need to contact either your GP or Social Worker and ask them to make a referral for NHS Continuing Healthcare...” (my italics).

I next mailed my GP asking him if he could please make a referral for Continuing Healthcare. I received a practically immediate reply (02/08)saying: “Hello.Doctors never do these, our district nurses do so will ask them to see you and do referral (sic).” Then (09/08), from the GP's secretary: “Dr... has asked me to acknowledge your email as above when you ask (sic) him to make a referral. Unfortunately this is something that GP's dont (sic) do referrals for and Dr... has suggested you contact Social Services or the District Nurse.”

I mailed 'Social Services,' Adult Social Care explaining what I was requesting. Shortly after on the same day, I received a phone call from and 'Assistant Practitioner' who, in a long conversation, took exhaustive details of my request and my medical conditions: Degenerate lumbar scoliosis with stenosis and nerve root problems; COPD; Type 2 Diabetes; Cervical Oseoarthritis; Peripheral Neuropathy; Single Sided Deafness (left mastoid exposed); Essential Tremors; Shortened colon; and Chronic Depression. She then told me she would have to speak to colleagues for advice. Later that day I received an e mail saying:“It was lovely to speak with you. Further to your enquiry, I can confirm that I have consulted with the Practice Consultant Occupational Therapist and been advised that a personal health budget is separate from social care. Health Budgets are a relatively new introduction and are being introduced in different ways in different areas. From what we understand in Norfolk they are being used for people with continuing healthcare... Apparently Social Workers do not take the lead with the health budget, as this is a health initiative...I am sorry that we were unable to be of much assistance, however if you feel we may be able to support in the future, please do not hesitate to contact the main 0344 800 8020 number.”
"Health Budgets are a relatively new introduction!” Strange thing to say when you consider, a few yars ago,  we at Equal Lives were commissioned by the then Health Trust (before CCGs) to carry out service user work on the plans. Ah well.   

So the remaining option was a 'District Nurse' so I found (on the internet) that, in Norfolk, these are based at Norfolk Community Health and Care NHS Trust. Finding out who to contact eventually revealed PALS (Patient Advice and Liaison Service). I mailed them over the weekend explaining my request. On Monday 15th I had mail: “...I have been in contact with the South Locality Hub regarding how you can contact the District Nursing service. In many cases patients are referred by their GP however they often take self-referrals. After speaking with the member of staff they have advised that you give them a call to discuss a self-referral which they may then be able to help you with. The telephone number for the Southern Area Hub is 01953 609409"

I duly phoned the above number and got a receptionist. After explaining once again what I wanted, she while she went away to consult. When she returned she asked: “are you known to the District Nurses?” I told her I wasn't and she then told me: “Well if you're not known to the District Nurses I'm afraid they are unable to help you”

Arrrrrrrrggggggr! I feel I'm oogly boogly birding. HELPpppppppppppppppppppppppppppppp..............

And yet, in a neighbouring County: Jacqueline Hanratty, Programme Lead for Personal Health Budgets said: “Ipswich & East Suffolk CCG and West Suffolk CCG are fully committed to the implementation and mainstreaming of Personal Health Budgets and Integrated Personal Budgets for its population. The aim is to give people with long-term conditions and disabilities greater choice and control over the healthcare and support they receive.
Mike Llywelyn Cox, 21/08/16.

“It will allow health professionals to work more closely with patients, resulting in improved health outcomes.
“Many local people have already played a key role in developing a framework for personal health budgets in east and west Suffolk and this will continue in the months ahead.”
Over the next 12 months a project board will start to deliver the implementation plan with relevant stakeholder organisations consulted at key decision points.

Postcode lottery or what!

Survivors' Poetry

Subject: Notice of Survivors' Poetry new poetry publications August 2016

Hello Andrew and History Group aficianados,

Survivors' Poetry announces:

August 2016

Your summer reading sorted!...to borrow a well-worn strap-line from the commercial world – Survivors’ Poetry is delighted to announce three Survivors’ Press poetry collections were published earlier in August 2016, available NOW on Amazon Kindle as e-Editions ahead of the print options. Plus an extra, for info…!

Wendy Young: The Dream of Somewhere Else


Sarah Gonnet: Voices


Steve Mann: Brief companionship


(And an extra! Philip Ruthen’s third collection, 'Familial', from Waterloo Press):

All best wishes,
Survivors’ Poetry
Charity No. 1040177 Company No. 2955445 Registered in England.
E: info@survivorspoetry.org
Director Simon Jenner:
E: drsimonjenner@gmail.com

Thursday, 21 July 2016

Survivor History

The theme of the Survivors History Group at the moment is museums,
collections, memorials.

With support from the survivor historians and others, the Marchmont
Association has approved a plaque to the poet and survivor activist,
Charlotte Mew. See http://studymore.org.uk/bio.htm#CharlotteMew -
This is a major victory, but they now need to raise £1,200 to cover
the cost of manufacturing and installing the plaque:

On Wednesday 27.7.2016 the London meeting of the Survivors History
Group will discuss what a survivor history museum might contain?. The
discussion will begin with an outline of survivor history by Peter
Campbell and then Peter and Andrew will make suggestions about the
possible content of a museum. Should a museum be focused on objects
like ECT machines, asylum notices, bath fittings, and picture
postcards of asylums, or should it be focused on the work of
survivors - art - poetry - politics - expression of experience -
individual and collective action? Or can environmental objects be
combined with survivors' views?

These issues were raised by Sarah Chaney and Peter Campbell in a
workshop exploring the implications of the terms `survivor´ and
`service user´ for today's real life survivors and users and others.
How can survivor history penetrate our culture and be meaningful to
the lives of new generations? What role do or can museums and
collections play in this debate?

This workshop took place at the "radical histories and histories of
radicalism" conference organised by the History Workshop Journal and
others in London a month ago. The conference helped to put survivor
history and culture in context with other movements and raised many
questions about how we pass our heritage on.

The Survivor History Group will continue the discussion and your
contribution, by email or at meetings, will be very welcome.

London meetings of the Survivor History Group are held at Together,
12 Old Street, London, EC1V 9BE on he last Wednesday of every other
month. We meet between 1pm and 4.30pm and refreshments are provided.

The next three meetings are

Wednesday 27.7.2016 What would a survivor history museum contain?

Wednesday 28.9.2016 Talking to Helen Spandler and Anne Plumb about
their work on Madness, Distress and the Politics of Disablement.

Wednesday 30.11.2016 Subject not fixed yet but two books are on our
agenda for discussing sometime:

Peter Beresford's All Our Welfare - Towards participatory social
policy - about the welfare state - and

Searching for a Rose Garden - a collection of articles edited by
Jasna Russo and Angela Sweeney that consider the survivor "rose
gardens" we might look for. Rose gardens here means ways of helping
us survive in the most human way we can imagine.

Both books challenge us to put our survivor thinking caps on and
consider history as the gateway to our future.

Best wishes, Andrew

Thursday, 26 May 2016

Info from Andrew

From Andrew Roberts
telephone: 020 8 986 5251
mobile 07505527755
home address: 177 Glenarm Road, London, E5 ONB

Book now for the `Insider, Outsider, Impostor?´ conference at Hendon (Middlesex University) on Monday 18.7.2016. As well as the information below, a pdf is attached.

Middlesex University Centre for Co-production in Mental Health
Inaugural International Seminar:

`Insider, Outsider, Impostor?´ Perspectives of mental health service user and survivor researchers and teachers on co-production in academia.

Monday 18th July

Room C114, College Building, Hendon Campus, Middlesex University
London NW4 4BT

Service users and survivors are vital partners in mental health
research and teaching. Experiential expertise is more important than ever for creating effective, inclusive mental health support. Co-production is emerging as a powerful way to approach equal
partnership working between practitioners and service users across mental health.

This international seminar launches the Centre for Co-Production in Mental Health at Middlesex University and explores the wide range of issues and agendas for co-production in mental health and academia. The seminar offers a unique opportunity to learn about mental health coproduction in academia from the perspective of leading service user and survivor experts who will discuss coproduction and service user and survivor leadership in research, teaching and course development, and mental health service consultancy.

The keynote speaker is Dr. Sarah Gordon, Research Fellow, Department of Psychological Medicine, University of Otago Wellington, New Zealand. Sarah is an international leader in the field and convenes the annual international Service User Academia Symposium.

Using a blend of talks and facilitated workshops, the aim is to bring together mental health service user and survivor teachers and researchers with their non-user colleagues and students to discuss how co-productive approaches can advance and improve research and practice.

The seminar is limited to 60 places.

40 places are available for other paying delegates at £59 each.

20 free places are available to service users and survivors who are
unwaged, on a low income or from small user-led mental health

Lunch and refreshments will be provided.

All delegates will receive a follow-up report of the proceedings of
the seminar.

To find out more and to book your place
please go to:


Sunday, 22 May 2016

From Andrew Roberts
telephone: 020 8 986 5251
mobile 07505527755
home address: 177 Glenarm Road, London, E5 ONB

A meeting of the Survivors History Group will take place at Together, 12 Old Street, London,  EC1V 9BE on Wednesday 25.5.2016 between 1pm and 4.30pm. Everyone is welcome and refreshments will be provided.

Here are the other dates for 2016:

Wednesday 27.7.2016
Wednesday 28.9.2016
Wednesday 30.11.2016

London meetings are on the last Wednesday of every other month

For this meeting, Peter Campbell has prepared a talk about disability and the survivor movement. This is not his review of "HelenSpandler's book", as he has not finished reading all of it, but he will refer to it.

Helen's book is Spandler, H., Anderson, J. and Sapey, B. 2015
Madness, distress and the politics of disablement. Policy Press

I am wondering if we could have a collective review of it on
Wednesday 27.7.2016? Could Peter Campbell and Peter Barham work together on something to launch a discussion? Andy Brooker, Frank Bangay,  Laura Able, myself and others have all been reading it. How many of us could attend on  27.7.2016? If not, perhaps 28.9.2016?

Helen Spandler has said she may be able to come to one of our
meetings to discuss her work.

Patsy Staddon and Bonnie the Poodle entertained us on Wednesday 27.4.2016. This is the first time that a poodle has taken part in our discussions and Patsy will send us a photograph to put on our website. Ruff Ruff from Bonnie to Patch and our other doggie members.

Peter McGeary has prepared notes on the discussion of Patsy's work and I hope to circulate a report later. Patsy's articles include:

"Service user led research in the NHS: Wasting our time?" in Critical Perspectives on User Involvement edited by Marian Barnes and Phil Cotterell.

She has edited two critical anthologies of research:

2013 Mental Health Service Users in Research: Critical Sociological
Perspectives Policy Press.

2015 Women and Alcohol: Social Perspectives. Policy Press.

Just in case this is becoming something of a monologue about Policy Press, let me mention that Andy Brooker met Alison Shaw at the launch debate for Peter Beresford's "All Our Welfare" on Wednesday 11.5.2016. Alison is the Director of Policy Press and is "proud to publish Peter's book" - and hopes we enjoy it. She was over the moon (sailing in space) to discover we are also discussing Helen and Patsy's books.

Graham Estop has requested a review of the launch and the glittering
array of left-wing politicians, intellectuals and journalists who
took part. I have asked Andy Brooker if he can assist.

As far as I know, the remaining items have nothing to do with Policy

From Thursday 30.6.2016 to Sunday 3.7.2016  there will be a history bonanza in London with 'Feminism and Radical Utopianism, Past and Present (Thursday at Birkbeck) followed by Radical histories and histories of radicalism, a three day conference at Queen Mary University

On the Saturday from 2 to 3.30:

Survivor or service user: what´s in a name?  The Survivor History
Movement and Mental Health Museums Workshop:
Sarah Chaney
Peter Beresford
Peter Campbell

Check it out. You can go to everything for £50, Unwaged £25, Or just go for a day at £20, Unwaged £10. The Thursday event is free, but you must book.

Asylum are keeping rather quiet about an article (by me), in the 30th Anniversary issue due out in June, called "Thirty years speaking out. The many voices of survivors".  They tell me that it will be there, but that you will be distracted by the fantastic other articles. So please buy a copy and read it all!

Graham Estop has found a really good Twitter account. Look at the
other entries as well as the one Graham writes about. Graham writes "John Price, who used to work for the Nottingham Advocacy Group, (and other places, now living in Rotherham), alerted me to this fascinating archive on reasons for admission to the Aberdeen asylum in 1847 - including "abuse of tea"! "Disappointment in love" is another interesting one.  Nice they're not using medical diagnoses in this list!


We have promising news, via Graham, about the future of the United Kingdom Advocacy Network (UKAN) archive, but I think that better wait till it is firmer before I report.

Finally - we have some good news of a grant that will enable the
Survivors History Group  to pay of our overdraft and carry on a
little longer at the standard of life we have grown accustomed to.
Thank you - Thank you - to The Barham Charitable Trust (-:

And thank you to Together for letting us meet in its headquarters and looking after us.

We will survive! We will thrive!

Best wishes, Andrew

Wednesday, 20 April 2016


From Andrew Roberts



telephone: 020 8 986 5251

mobile 07505527755

home address: 177 Glenarm Road, London, E5 ONB


The Survivors History Group has running out of money and so has had to  catch up on the "annual reports" which are a condition of our getting some more. The last one was in 2011, but we now have a draft

for the whole period of our existence (2005 to the present) at




Believe me, it is long. We will just submit to our funders a copy of

the report for 2014 and 2015. A draft copy of that is attached.

Please read it and reflect as it is supposed to be our opportunity to

think about where we have been and where we want to go.


Please let me have some feedback. What did we do that we have not

reported on? What do you think of what we have done? What do you

think we should have said?


Everyone is welcome at our meetings. We will feed you with sandwiches and things. The next one is next week:


Wednesday 27.4.2016 Survivors History Group Extraordinary Meeting 1pm

Together - Talking to Patsy Staddon about being a woman, using

alcohol, stopping using alcohol, being a survivor researcher and

editing books - amongst other things.  Patsy, who has already been

very generous to us with copies of "Mental Health Service Users in

Research: Critical Sociological Perspectives", will be with us in

person to discuss her life, and the light it sheds on society and



The other meetings in 2016 are


Wednesday 25.5.2016


When we will probably take a broad look at the content of "Madness,

distress and the politics of disablement"


Wednesday 27.7.2016

Wednesday 28.9.2016

Wednesday 30.11.2016


Best Wishes, Andrew




Survivors' History 2014

Annual Report from the Survivors History Group

Survivors History 1800-2015: In 2014, a lot of work was expected on the book about survivor history based on our website. None of this happened, because of unspeakable events. Confidence was slowly regained during 2015.

Eric Irwin

In January, the main item was a discussion of Eric Irwin and his contribution to the movement. We heard recollections from Brian Douieb, Liz Durkin, Barbara Morden and Frank Bangay.

The Last Asylum. A memoir of madness in our time Penguin, by Barbara Taylor was published in February 2014 by Penguin.. It told her journey through mental illness and the psychiatric health care system in the context of the wider story of the end of the UK asylum system. Several of us attended the launch event at Queen Mary, University of London on Tuesday 18.3.2014 This was a public discussion of mental health care in Britain, past and present, featuring Peter Barham - Peter Campbell - Annette de la Cour - Antony Garelick and Barbara Taylor herself. Afterwards, we prepared a webpage of the talks and summary of some of the discussion.


Our very own professor in user-led research

One of those who originally promoted the study of survivors history was Diana Rose. In March 2014 we received an excited and exciting email from Diana: "Are you still keeping the timeline up to date? If so, here's some news. I have just been appointed Professor in User- Led Research at IoP, King's College London. No doubt some would see this as co-option of movement intellectuals but I am quite pleased and think I can make a difference 'inside' the system whilst respecting those who choose to do this from the outside. Best wishes Diana". In September Constantina Papoulias and Jenny Walke led a discussion about the Service Users Research Enterprise, which Diana is responsible for, and its current research projects


Vincent van Gogh


March 2014 saw the publication of Splitting in Two: Mad Pride and Punk Rock Oblivion by Robert Dellar

Frank Bangay wrote that Robert traces his life from a working class area of Watford, through Sussex University and London squatting community to what he calls the "murky waters of mental health" including pioneering work in Hackney Hospital setting up a patients' council and advocacy department.

In the mid 1990s, when Hackney hospital was closing, Robert organised some lively gigs, which he describes n colourful detail. He worked at Southwark MIND (possibly the first user-run MIND group) before joining Mad Pride, an organisation which linked mental health to rock and roll through the gigs it produced. Robert and his friend Peter Shaughnessy also turned mental health demonstrations into theatre.

We discussed Roberts book in 2015

From March to July 2014, there was an exhibition at the Musée d'Orsay in Paris called Van Gogh / Artaud. Le suicidé de la société. Members of the Survivors History Group visited and made a report to our May meeting when we discussed of art and mental health in relation to Vincent van Gogh. A web report on the meeting was put online and it was suggested we should have a similar report on the work of Mary Barnes and Howard Mingham.

message of recovering health through history. It recorded Ukawsaw Gronniosaw travelling from Africa to the USA, to England (1772?) and to Holland, "mad Mary Lamb" (1764-1847)

Mad World.

On 9.6.2014 we exhibited at the International Service User Leadership and Peer Support Festival, hosted by National Survivor User Network (NSUN) and Together, to showcase international best practice from people with experience of mental health conditions. We called our exhibition "solidarity and diversity in our mad world". A central part of this was a timeline headed "International Survivor History - Solidarity in multicultural diversity". The timeline began with the sankofa bird (Ghana), with its


writing stories for the English speaking world, the 1845 Alleged Lunatics Friend Society in England, (Mrs) Elizabeth Packard versus her husband, Theophilus Packard, in an Illinois, USA, court in 1864 and Vincent van Gogh in Holland and France. In the 20th century it listed Clifford Beers (1876-1943) on the international stage, August Natterer, a visionary (1907) German asylum artist, James Ollier and friends defending rights inside an English asylum in 1924, remembrance of those who were exterminated from 1939, Peter Whitehead organising inside Rampton (England) in 1955, Recovery (now Grow) in Australia (1955) and Ireland (1957), 1968: "We Shall Overcome" formed in Norway in 1968, Coudewater in Holland in 1970 and the Scottish Union of Mental Patients in 1971. Madness Network News started in the USA in 1972. In 1973, groups from France, Germany, England and Spain met together in Fresnes in France. Judi Chamberlin published On Our Own. Patient- Controlled Alternatives to the Mental Health System in the USA in 1978 and brought copies to London, Holland and Iceland to share with users groups in 1982. In Canada in 1980, the call "Cabbages of the world unite" led to the world- wide network of what is now called, Disabled People's International.

In 1982 Frank Bangay's solidarity poster seemed to say it all: "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 found strength"

The World Mental Health Conference held in Brighton, England in July 1985 was the scene of an international user revolution in which Judi Chamberlin, Frank Bangay and users from Holland, Denmark and Scotland played leading roles. Mary O'Hagan in Auckland, Aotearoa/New Zealand, in 1987 was inspired by Judi Chamberlin's book to found "Psychiatric Survivors". In 1990 se went on a world tour and Survivors Speak Out in England published her Stopovers on my way home from mars. Reflective journey through the psychiatric survivor movement in the USA, Britain and the Netherlands in 1993. In 1990 "the initiative was taken in the Netherlands to form a network of associations of (former) psychiatric patients from various European countries.". The World Network of Users and Survivors of Psychiatry began as the World Federation of Psychiatric Users formed at the World Federation for Mental Health Congress in Mexico City in August 1991. These congresses, held every two years, were a convenient place for users to meet as there were always some attending anyway. Tower Hamlets African and Caribbean Mental Health Organisation, formed in 1996, argued that "We must go back and reclaim our past so we can move forward". Through exploring the past of black people, identity is restored and health found through history. SIMBA (Share In Maudsley Black Action), formed in 1998, followed Bob Marley's advice that "none but ourselves can free our minds" and instead of sitting on hospital committees only talked to management if it could do so in poetry and song accompanied by the cubs (children).. Psychiatric Survivors' Archive Toronto (Canada) began meeting regularly in January 2001 - They now have an extensive archive classified as organisational and personal. In India, issue one of aaina - a mental health advocacy


newsletter was published in March 2001. The international language of Japanese comics explored a madness in everyone in Crona "Dark One" (2003). Gender is just one thing s/he does not know how to deal with. The inaugural meeting of organisations representing users and survivors on the African continent took place in 2005, in Kampala, Uganda with representative from Guinea, Ghana, South Africa, Malawi, Zambia, Tanzania, Rwanda and Uganda. The Pan African Network of Users and Survivors of Psychiatry is now called the Pan African Network of People with Psychosocial Disabilities. The Oor Mad History project in Edinburgh was inspired by the History of Madness course at Ryerson University, Toronto, Canada, which started in the autumn of 2004. In 2010 it published Oor Mad History. A Community History of the Lothian. Mental Health Service User Movement. In 2013 Canadian survivors followed this by publishing Mad Matters: A Critical Reader in Canadian Mad Studies

Bristol Independent Mental Health Network

In August 2014 Bristol Independent Mental Health Network, a new user led network of about 25 user led groups and individuals, had its first Annual General Meeting. This followed two years of development Alison Faulkner as independent trainer help with some of the early development of the group with two workshops in 2013. The Network has individual membership as well as group membership. Group members include Bristol Hearing Voices Group and Bristol Survivors. The aim is to provide a stronger user voice access Bristol. The network now (2016) has a website http://bimhn.org.uk/ , an active twitter and a facebook page. We were kept in contact with developments by our Bristol correspondent, Glen Townshend.

Mad studies: On 9.11.2014 a "mad studies stream" was started at Lancaster University's Disability Studies Conference

In presenting the November 2014 conference, Peter Beresford argued that mad studies was "a movement to bring people with experience of mental distress into the discourse around care and treatment"

Mad Studies is a term that originated in Canada about 2011 to describe a "new discipline" said to be emerging at Ryerson University. David Reville used the term - in connection with his course A History of Madness, writing of mad studies as patients' rather than doctor's views.

A link between survivors in Toronto and Edinburgh goes back, at least, to 2001 and led to a Mad People's History module from 2014, but activities are not called "mad studies" in Scotland.


The idea of Mad Studies received an enormous boost from the publication of Mad Matters A Critical Reader in Canadian Mad Studies in the early summer of 2013. Nederland (Holland) was quick to pick up the new term. The first posting on Mad Studies - Voor high-knowledge crazies in Nederland was made on 6.8.2013. The first major English "mad studies" events took place in 2014 and a conference was organised in 2015.

Courses in Canada, Holland, Scotland and England may operate with different concepts of what Mad Studies is and what its relation is to survivor centred research.


In December 2013 The Court of Appeal upheld a decision that the Work Capability Assessment discriminates against people with mental health problems. This was a victory for the Mental Health Resistance Network. In March 2014 and "Easy Read" guide to the budget said that from April 2015, "the Government will only have a certain amount of money to spend on benefits". In November 2014 a video from Moore Lavan Films, called We're NOT all in this together, told the story of the closure of the Independent Living Fund from 2015 and disabled people's campaigns against this.

Finance end of 2014

At the close of the year our available resources were £1,318.77. Accounts were shown to the November 2014 meeting of the London Group. On 5.3.2015, Peter Campbell examined the accounts and relevant papers from October 2007, when an account was first opened, until 31.12.2014 and signed that he is satisfied that they are a true statement of the organisation's transactions. Peter Barham examined the same accounts and relevant papers on 23.2.2015 and signed that he is satisfied that they are a true statement of the organisation's transactions

Survivors' History 2015

Annual Report from the Survivors History Group A new structure

In September 2014 we began a discussion of the future of the Survivors History Group (What could we do? What shall we do?) with respect to the next few meetings and other events related to them. We decided that we wanted London meetings to continue, as possible, as place for discussing issues about survivor history. In 2015 alterations were made to the structure of the Survivors History Group aimed at making continuation possible. A small group will be responsible for finance and related issues. Networking, through mailings and other electronic means, will be done by those who can, and the discussion meetings will be organised by Andrew Roberts and whoever can help him. We are very grateful to Together for the facilities they provide and their friendly support.


Howard Mingham and Mary Barnes and survivor art

Early in the year, we discussed Howard Mingham and Mary Barnes and survivor art. A memorial meeting for Howard Mingham was held in October 2014, thirty years after his death. At a later meeting, David Kessel commented on how hard Howard worked on his poetry. he also said that he thought there was a connection between Howard (and his) diagnoses as schizophrenics and their poetry. They are deeply connected. "Mental struggle expresses itself in Howard's poetry"

Dina Ibrahim visited the Mary Barnes exhibition and co-authored a report. She also attended the memorial meeting for Howard Mingham. When unable to attend a London meeting, Dina rang as up and talked to the meeting by telephone.

Recovery: "Recovery In The Bin" is a user led group critical of the recovery model. It published 18 Key Principles in February 2015, saying We believe that there are core

principles of 'recovery' that are worth saving, and that the colonisation of 'recovery' undermines those principles, which have hitherto championed autonomy and self- determination.". Recovery In The Bin's first public presentation was at the 'Making Sense of Mad Studies' conference in Durham in October 2015. AE O'Donnell presented and other Recovery In The Bin members were also present - Sue Phillips, Grietje Keller, Jayasree Kalathil, Ute Maria Kraemer and Alison Faulkner.

Stigma and austerity

In April 2015 the UK National Hearing Voices Network held a conference called "time for (real) change" that was critical of the "current paradigm of pathologising and labelling human experiences". The "(real)" in the title suggested that campaigning against stigma is not enough. A revolution in mental health and society was suggested. But some thought this was not enough. Joanna @maddoggiejo tweeted "no mention of ideological austerity, welfare processes and cuts, and capitalism... I wonder if the ... revolution has any interest in social justice as well as diagnosis/Mental Health Act/alternatives? One does not make sense without the other, we have no movement without social justice at the heart of it"

Beyond Bedlam?

In May 2015, Peter Campbell started a discussion about collaboration and conflict in 1997 by reviewing Beyond Bedlam: Poems written out of Mental Distress, which was published in 1997 in cooperation between Royal Bethlem and Survivors Poetry and Jenny Walke made a presentation about the modern Bethlem Hospital (1930 to the present). Modern Bethlem includes the recently opened Museum of the Mind, which a group of us visited and made suggestions about in March. Our special report on Bethlem Hospital was one of the documents made available on the PPlog internet blog by Mike Cox (Norfolk) at http://micoxpplog.blogspot.co.uk/2015/07/survivor-history-special-bethlehem.html


Standing up to madness - An autobiography

In July 2015 we had a presentation of Standing up to madness - An autobiography by Nelsy and discussion. Nelsy focused on the contrast between "capitalist" and "natural" ways of relating to one another.

The Mind Archive: The Survivors History Group has long campaigned for the papers of Mind (the National Association for Mental Health) that were deposited in the Wellcome Library in London to be catalogued and made available to the public. In June 2015, we took part in a seminar celebrating this achievement. This concluded with a discussion of the importance of collecting and preserving survivors' archives.


In June we celebrated ten years of survivor research at St George's Hospital.

Engage Visually drew this six metre cartoon of a river winding through words and pictures of our discussions, and flowing on into

a future that relates to people in the street and the community. We wrote a report called User involvement from a bus to Clapham

In July and September 2015, Peter Campbell introduced us to Mental Health Service Users in Research: Critical Sociological Perspectives, edited by Patsy Staddon. In the discussion, the fancy word of the day was autoethnography. .

Mad Pride and Punk Rock - Penny Poets Manifesto - Madness, distress and the politics of disablement

In September 2015 we had a discussion of Splitting in Two: Mad Pride and Punk Rock Oblivion led by Frank Bangay and Peter Campbell -

David Kessel's Penny Poets Manifesto and the Schizophrenic Salvation Network were introduced by Peter Barham.

In December 2015 we began Helen Spandler, Jill Anderson and Bob Sapey's new collection of articles on Madness, Distress and the Politics of Disablement by discussing a chapter by Anne Plumb. .

Including everyone

One of the issues highlighted by our visits to the Museum of the Mind and to the research seminar at St George's is what might be called the compulsory whiteness of history. The majority of the world's population are excluded. The group has begun to discuss the history of survivors in Africa and of African survivors living in London. Hagir Ahmed said that her Sudanese community group include many mentally distressed people who have witnessed trauma of war, including rape. Now experiencing domestic abuse and violence. In her view the medicalisation of health issues 'papers over the cracks' that originate in peoples misuse of others.

Finance end of 2015

Our bank balance at the close of 2015 was £635, but money was owed to Andrew Roberts for the purchase of refreshments and payment of other expenses.



Friday, 26 February 2016

Devious Government Tactics?


Copied below is a current letter from the government which appears to shift allocated capital funding for 2016/17 from adult social care to DISTRICT councils and the DISABILTY FACILITIES GRANT. Cunning stunts!


To: The Director of Adults’ Social Services


February 2016

County Councils
Metropolitan District Councils
Shire Unitary Councils
London Borough Councils
Common Council of the City of London Council of the Isles of Scilly



1. This letter clarifies local authority capital funding for the financial year 2016/17, which was subject to the 2015 Spending Review.


2. This letter is provided for information only, and confirms details and allocations of Department of Health local authority specific capital funding.

Disabled Facilities Grant

  1. The Disabled Facilities Grant (DFG) is for the provision of adaptations to disabled people’s homes to help them to live independently for longer. Following the approach taken in 2015-16, the DFG will again be included within the Better Care Fund (BCF). This is to encourage areas to think strategically about the use of home aids/adaptations, use of technologies to support people in their own homes, and to take a joined-up approach to improving outcomes across health, social care and housing. For 2016/17, the funding will be £394m in total, a substantial increase from £220m in 2015/16.

  2. The DFG will be paid to upper-tier authorities in 2016/17. However, the statutory duty on local housing authorities to provide aids and adaptations under the DFG to those who qualify will remain. Therefore, each area will have to allocate this funding to its respective housing authorities (district councils in two-tier areas) from the pooled budget to enable them to continue to meet their statutory duty to provide adaptations to the homes of disabled people, including in relation to young people aged 17 and under.

  3. All funding pooled through the Better Care Fund – including DFG funding – will need to be allocated on the basis of plans that are jointly developed and agreed with relevant local authorities. In the case of the DFG this refers to local housing authorities. Through this local planning process, some areas may agree to invest some of this funding in

) England )

broader strategic capital projects. However, this is a local decision, to be considered as part of the BCF planning process.

Social Care (Capital) Grant

  1. To note, the social care capital grant will be discontinued from 2016/17. In order to maximise value for money of central funding the Department of Health has concentrated its social care capital grant funding into the Disabled Facilities Grant, as research suggests it can support people to remain independent in their own homes – reducing or delaying the need for care and support, and improving the quality of life of residents.

  2. The increase in the DFG of £174m outstrips the removal of the Social Care (Capital) Grant, which came to £134m in 2015/16.


8. There will be a further LASSL which confirms details and allocations of Department of Health local authority specific revenue funding. This will be published shortly.


9. For further information on these allocations please contact:

The social care finance team (SCFinance-Enquiries@dh.gsi.gov.uk)
Social Care, Local Government and Care Partnerships Directorate, Department of Health,

Richmond House, 79 Whitehall, London, SW1A 2NS

Previous LASSLs are available at: https://www.gov.uk/government/publications?departments[]=department-of-health. © Crown copyright 2014. This Circular may be freely reproduced by all to whom it is addressed.


ANNEX A - Disabled Facilities Grant Allocations 2016/17

Local Authority (upper-tier) £s

Local Authority (lower-tier) £s

Aylesbury Vale 754,163

Buckinghamshire Cambridgeshire





2,777,280 3,478,866





South Bucks
Cambridge 576,272

545,122 490,708 987,287

East Cambridgeshire
South Cambridgeshire
Allerdale 952,794

Barrow-in-Furness Carlisle


844,881 1,018,751 566,013

974,972 1,467,316 569,515 372,850 581,448 Amber Valley 1,001,304

South Lakeland

Bolsover Chesterfield Derbyshire Dales Erewash

789,124 952,299 416,276 736,221 389,137 581,023 615,337

High Peak
North East Derbyshire
South Derbyshire
East Devon 1,065,756

Mid Devon
North Devon
South Hams
West Devon
Christchurch 457,760

671,330 561,385 777,478 613,119

1,054,509 591,819 401,613

East Sussex 5,582,273

Essex 8,217,306

647,517 373,492 340,687 785,706 734,577

East Dorset
North Dorset
West Dorset
Weymouth and Portland
Eastbourne 1,203,581

Basildon 989,257

1,407,313 842,012 1,270,554 858,813

Braintree Brentwood Castle Point Chelmsford Colchester Epping Forest Harlow Maldon

730,156 290,073 579,533 755,993 994,045 664,970 615,382 420,343 3

Gloucestershire 4,681,764

Hampshire 9,747,606

374,747 1,636,940 165,868

Cheltenham 701,434

Forest of Dean
Basingstoke and Deane 1,064,386

East Hampshire Eastleigh Fareham Gosport

New Forest
Test Valley
Broxbourne 577,366

903,196 687,910 873,079 571,746 944,398

1,148,441 900,991 590,990 617,780 569,523

Hertfordshire 5,651,727

Kent 13,128,405

1,362,535 900,536 816,497 937,669 838,257

East Hertfordshire
North Hertfordshire
St Albans
Three Rivers
Welwyn Hatfield
Ashford 707,629

675,182 530,136 537,599 653,792 530,814 576,398 455,778 522,838 591,823

Tonbridge and Malling
Tunbridge Wells
Burnley 1,847,235


Lancashire 11,477,948

468,953 1,022,900 803,516 1,031,826 889,177 1,048,207 1,981,814 2,342,439 916,559 981,256

Ribble Valley
South Ribble
West Lancashire
Wyre 1,428,119

613,972 848,621 761,990

1,462,514 768,782 1,149,593 273,220 791,339 543,377 989,185


Leicestershire 3,067,448

Lincolnshire 4,884,203

Norfolk 6,367,664

Northamptonshire 3,518,428

North Yorkshire 3,537,599

Nottinghamshire 5,475,412

Oxfordshire 4,532,081

Somerset 3,466,256

Hinckley and Bosworth
North West Leicestershire
Oadby and Wigston
Boston 446,001

456,797 772,425 353,013 406,500 237,311 524,776 316,626

East Lindsey
North Kesteven
South Holland
South Kesteven
West Lindsey
Breckland 921,450

1,458,783 586,170 626,912 539,728 670,960 555,649

Great Yarmouth
King's Lynn and West Norfolk
North Norfolk
South Norfolk
Corby 403,833


941,786 1,248,225 953,786 882,232 715,645

East Northamptonshire
South Northamptonshire
Craven 433,307

334,672 397,153 505,145

1,092,088 327,542 457,995

Hambleton Harrogate Richmondshire Ryedale Scarborough Selby

375,828 571,343 212,493 452,569

1,145,100 346,958 Ashfield 743,713

Newark and Sherwood Rushcliffe

917,848 676,273 820,019 993,620 803,085 520,855

Cherwell 846,856

South Oxfordshire
Vale of White Horse
West Oxfordshire
Mendip 700,744

964,129 1,054,022 1,113,055


South Somerset
Taunton Deane
West Somerset
Cannock Chase 725,896

East Staffordshire

Staffordshire 6,868,850

765,786 983,781 657,557 358,389



Suffolk 4,824,576

Surrey 6,930,715

761,300 1,177,897 774,240 1,042,314 1,211,721 380,327

South Staffordshire
Staffordshire Moorlands
Babergh 522,743

Forest Heath
Mid Suffolk
St Edmundsbury
Suffolk Coastal
Elmbridge 667,039

362,363 934,117 480,275 635,439 776,333


Epsom and Ewell Guildford
Mole Valley
Reigate and Banstead Runnymede Spelthorne

535,225 552,066 606,214 878,406 594,584 644,335 600,832 360,308 584,905 906,800

Warwickshire 3,511,151

West Sussex 6,467,144

Worcestershire 4,235,741

Surrey Heath
North Warwickshire 543,688

Nuneaton and Bedworth Rugby Stratford-on-Avon Warwick

1,128,215 492,918 662,298 684,032

Adur 511,693

Mid Sussex
Bromsgrove 709,261

1,324,891 1,174,486 715,853 957,246 796,061 986,915

Malvern Hills
Wyre Forest 1,002,622

478,123 649,144 537,726 858,864


Unitary Authorities /Boroughs £s

Barking And Dagenham 1,264,509 Barnet 1,971,131 Barnsley 2,330,936 Bath And North East Somerset 991,023 Bedford 965,566 Bexley 2,023,569 Birmingham 8,803,371 Blackburn With Darwen 1,460,815 Blackpool 1,840,297 Bolton 2,452,071 Bournemouth 1,181,889 Bracknell Forest 658,685 Bradford 3,519,468 Brent 3,599,500 Brighton And Hove 1,597,166 Bristol, City Of 2,421,339 Bromley 1,680,928 Bury 1,423,169 Calderdale 2,063,214 Camden 727,538 Central Bedfordshire 1,315,349 Cheshire East 1,637,470 Cheshire West And Chester 2,526,768 City Of London 26,313 Cornwall 5,243,484 County Durham 4,890,626 Coventry 2,851,451 Croydon 2,046,194 Darlington 739,776 Derby 1,599,003 Doncaster 1,965,353 Dudley 4,373,387 Ealing 2,529,769 East Riding Of Yorkshire 2,127,454 Enfield 2,542,222 Gateshead 1,479,687 Greenwich 1,941,443 Hackney 1,184,865 Halton 1,377,944 Hammersmith And Fulham 1,018,510 Haringey 1,818,183 Harrow 1,180,502 Hartlepool 863,063 Havering 1,426,010 Herefordshire, County Of 1,558,348 Hillingdon 3,456,593 Hounslow 2,033,255 Isle Of Wight 1,584,113 Isles Of Scilly 20,871 Islington 1,318,486 Kensington And Chelsea 666,726


Kingston Upon Hull, City Of 1,968,062 Kingston Upon Thames 1,032,341 Kirklees 2,483,091 Knowsley 1,933,712 Lambeth 1,145,265 Leeds 5,630,909 Leicester 1,853,971 Lewisham 1,053,080 Liverpool 5,920,841 Luton 1,096,073 Manchester 5,746,448 Medway 1,691,060 Merton 989,719 Middlesbrough 1,563,664 Milton Keynes 870,924 Newcastle Upon Tyne 1,867,086 Newham 1,932,506 North East Lincolnshire 2,188,308 North Lincolnshire 1,763,122 North Somerset 1,632,396 North Tyneside 1,306,700 Northumberland 2,327,915 Nottingham 1,888,709 Oldham 1,618,419 Peterborough 1,523,587 Plymouth 1,954,042 Poole 833,647 Portsmouth 1,403,597 Reading 815,160 Redbridge 1,659,392 Redcar And Cleveland 1,260,482 Richmond Upon Thames 1,307,463 Rochdale 2,046,740 Rotherham 2,119,269 Rutland 185,789 Salford 2,407,464 Sandwell 3,223,486 Sefton 3,348,568 Sheffield 3,509,204 Shropshire 2,498,220 Slough 775,074 Solihull 1,695,563 South Gloucestershire 1,601,273 South Tyneside 1,335,576 Southampton 1,711,289 Southend-on-Sea 1,193,374 Southwark 1,149,371 St. Helens 2,180,373 Stockport 1,980,621 Stockton-on-Tees 1,246,607 Stoke-on-Trent 2,388,829 Sunderland 2,857,117 Sutton 1,233,241 Swindon 897,154


Tameside 1,978,203

Telford And Wrekin






Tower Hamlets








Waltham Forest






West Berkshire








Windsor And Maidenhead












The Tough Tenor (when I could walk)!

In a Mellotone

In a Mellotone
Ah sweet Youffff