Monday, 16 November 2020
Sunday, 1 November 2020
Sunday, 25 October 2020
There is a new report by NDTI (National Development Team for Inclusion - firstname.lastname@example.org) and Voice Ability, the champion for people with mental ill-health conditions and learning disabilities (https://www.voiceability.org/). Taking notice of this report is of great urgency, detailing as it does the bad treatment afforded to our most vulnerable citizens by government and its associated institutions. Extracts say:
"Blanket decisions about access to treatment and visitors are being taken without clear justification, including enforced confinement, denying access to outdoor space or gardens, and preventing leave for people who are on mental health wards. Half of advocates reported care providers had stopped all visits and almost half (47%) reported that people were being confined to their rooms…."
"A lack of understanding of people’s rights under the Mental Capacity Act (MCA) is a common thread through many responses. Advocates reported serious concerns that people who do not have capacity were not being appropriately assessed. Best interest meetings and decisions were not being taken in line with the MCA. Further, some reported “restraint used unlawfully” and people being “threatened with restraint” when distressed or not wanting to be tested for coronavirus."
Everyone should be aware of the report and the human suffering it discloses.
Tuesday, 20 October 2020
Recovery and reset for respiratory: restoring and improving basic care for patients with lung disease
This statement is from the current working requirements of social workers. If these standards are not adhered to, social workers can be disciplined or even struck off, preventing them from practising anywhere. Professional Standards Guidance - ‘Social Work England’ Social workers embrace and promote the fundamental rights of all people. They recognise and respect the dignity and worth of everyone and support people to improve their life outcomes. To practise safely, it is essential for all social workers to know and comply with legal frameworks relevant to their work and obligations to protect and promote people’s rights. People should have access to the support and services they need in line with the Equality Act 2010, irrespective of aspects of their identity,...” Complaining (whistleblowing) about breaches of these professional standards protects others too. In spite of difficulties that could arise around evidence, I should have done just that. By not doing so, I failed others in need.
Monday, 12 October 2020
This is a copy from the British Lung Foundation site It is so good and profound I had to post it here too (with names redacted)
Friday, 9 October 2020
I'm going to use myself as an example of how disabilities can be created by impairments (medical model).
The emphasis on 'impairments' here comes about by my personal circumstances, in that I now have very little contact with social factors as I very rarely get out of the house - I'm a pseudo residential prisoner.
Within these four walls, my impairments and their effects are:
1. A degenerate lumbar scoliosis with a trapped nerve.
Loss of control of my left leg with a loss of balance leading to unsteadiness, clumsiness and falls. I have to use a wheelchair most of the time but I can stand precariously (for five minutes before acute pain) and move around using things like kitchen units for support. Pressure sores has been a recent developing problem but this been alleviated by equipment provided by community physiotherapy.
2. ESSENTIAL TREMORS - In capitals due to its everyday-allday de-skilling effects:
Inability to write anything longhand so no notes; difficulty in typing and keyboard skills; trailing and inadvertent duplication of letters; inaccurate aiming at chosen letters; difficulty separating pages in any paper document; fumbling, shaking and dropping cups and plates; as a musician since age 14, having had to give up playing my woodwind instruments.
And a huge disadvantage because of an inability to use some of today's technological developments: many facilities now are delivered via 'apps' on smart phones and tablets. I'm unable to use either of these as they require accurate finger tapping. So I'm excluded from many important facilities by a combination of the medical and the social model.
3. COPD (Chronic Obstructive Pulmonary Disorder).
The slightest physical effort brings acute shortness of breath: walking a few steps with a walking aid; singing; using my manual wheelchair; having a shower (I have to use a breath relief inhaler before every shower), and drying myself and dressing myself after the shower (I have to allow a good hour and 45 minutes for every shower). I have to sleep or semi-recline upright in a reclining chair - I can't use a bed.
COPD is a progressive disease and, according to recent approved research, very reactive to air pollution, especially to PM2.5 nano particles. Exposure to air pollution exacerbates breathing difficulties to the point where it can cause fatalities. I have refused, for several years now, to go near to the centres of urban population here in the UK.
4. Single sided deafness (in the left ear).
loss of stereophonic hearing is a curse, I fail to hear people speaking to me on my left side and I'm often classed as 'stand-offish' because of that; holding a conversation with somebody while the television is on is a gnat's whisker away from impossible as one drowns out the other. My wife often tells me, irritably:"I told you that ages ago." She may be right but she sometimes speaks while facing away from me and I fail to hear her in those circumstances. When I was able to travel outside the house, I often attended meetings (maybe about social and medical models of disability) but if 'workshops' were held using several groups of participants in the same room, I couldn't take part as the general background noise drowned out whatever the people on my table were saying to the workshop or even directly to me.
5. Peripheral Neuropathy caused by Type 2 Diabetes.
This is in both legs and feet. The condition causes a loss of sensation , mainly in my feet but that extends up toward my knee too. My latest diabetic review (Sept 2020) concluded the loss of sensation is now complete. This interacts with no.1 on my list, making personal balance even more precarious and increasing the risk of falls.
The neuropathy causes intermittent and unpredictable pain ranging from stilletto like stabbing, sharp electric shocks and grumbling aches. Sleep while this is happening is problematic in the least.
Of these elements, only the single sided deafness has any 'social' components. So, given my circumstances, I'm disabled primarily by 'medical model' impairments. IMHO, Disability Rights campaigners should give some thought to the absolute dominance of the Social Model.
Thursday, 8 October 2020
I’m really sick and tired of this blasted curse that’s following me around. I’m talking about essential tremors which means I’m unable to use a smart (touch) mobile phone; or an iPad; I can’t write a long hand and I have extreme difficulty in typing. A good example of how this can obstruct social action is that I sometimes get emails asking me to mail my MP. This is just too problematic for me and I never do now (although I have a collection of several replies from the past in which he just trots out tory mantras).
This programme, ” SpeechTexter ” attached to Google Chrome is really valuable but frustrating at times when when it misunderstands what I’m saying and sometimes crashes losing all the text.
I find Mac Dictation, which I have on my computer, is useless as the bulk of what I dictate comes out as unrelated nonsense.
I’m told that Dragon Professional is the the best program to use for turning voice into text and it will will allow you to write all sorts of documents, including emails, by just using your voice. However, it is is prohibitively expensive for me at £294 a copy. So I’m in the process of applying for a Personal Health Budget to get one.
I’m finding that the application process is is tied firmly up in red tape and and first of all, there has to be an assessment or triage to judge whether I’m eligible for what the NHS terms ” Continuing Health Care. ” after asking my GP how I went about claiming this budget I received a phone call today from a very nice lady who is a ” Social Prescriber. ” She is employed by the district council which is unusual in itself, but she knew nothing about the budget I am seeking to apply for. She had to hang up to seek advice and when she phoned back, she told me I have to get in touch with an organisation called Beacon.
I did this online and was directed to download what they call call a Toolkit for beginning an application. Alternatively, the social prescriber said she would refer me for an adult social care assessment with a view to obtaining the the programme (extra problem here as SpeechTexter insists on USA spelling) from the ‘assistive technology department.’
I’m writing this as it seems to be a good illustration of how difficult it can be for disabled people to get help.
I have for some time been concerned about the establishment’s attitude towards disability and and independent living. I think the the culprits lie both in health and social care, exacerbated, of course, by covid-19 .
A good example of current problems is the current situation applying to to many GP practices. All GP practices should have (according to NHS England) active Patient Participation Groups. Unfortunately, this is far from the case with some CCGs content to let their patient participation groups lie dormant under the excuse that ppg members have no access to video technology.
To my mind what is needed here is is social media traffic acting as research about problems individual patients and disabled people are facing because of this.
Thursday, 19 January 2017
telephone: 020 8 986 5251
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
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
Best wishes, Andrew
Friday, 11 November 2016
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
telephone: 020 8 986 5251
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
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
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.”
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.
“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!
Hello Andrew and History Group aficianados,
Survivors' Poetry announces:
NEW from SURVIVORS’ PRESS!
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,
Charity No. 1040177 Company No. 2955445 Registered in England.
Director Simon Jenner:
Thursday, 21 July 2016
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
Sunday, 22 May 2016
Wednesday, 20 April 2016
From Andrew Roberts
telephone: 020 8 986 5251
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
When we will probably take a broad look at the content of "Madness,
distress and the politics of disablement"
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.
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)
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"
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. .
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.