The campaign for crisis services 10 June 2011

This is the text of a talk I (Anne) gave at the Edinburgh Crisis Centre Learning Event on Friday 10 June 2011

Later on I read from the section on the Crisis Services Campaign in the Oor Mad History book, pp 90-95

I remember sitting in an office in Deaconess House, with Brian Cavanagh, who was the chair of NHS Lothian, and he said that the crisis centre was the shibboleth of the user movement.

I didn’t know what this word meant at the time but I knew it wasn’t a compliment.

A shibboleth is a word or phrase that is used by a group to indicate who belongs to the group and who doesn’t. It implies that the phrase itself is almost meaningless apart from this purpose. So members of Edinburgh Users Forum and other groups were going about saying “we want a crisis centre” to show that we belonged and that we had no real idea of what a crisis centre was.

That was not my experience. I remember going to meetings of what was then Lothian Users Forum in the mid 90s. People talked about all sorts of radical ideas such as advocacy and safe places to go when in crisis.

We got individual advocacy pretty quickly, although Advocard was a small organisation only providing advocacy to the northeast sector of the city. But the crisis centre was another matter.

I knew it was a radical idea when I first heard about it, but it also seemed to be just common sense. A safe, welcoming place for people to go when in crisis, where they would be treated with respect and without force. And that it was what they considered it a crisis, not what a worker said was a crisis. People talked about how it might mean they would not have to go into hospital, voluntarily or sectioned. How it might mean they would be able to sort out what was going on, whether emotional or practical or both, to enable them to get back on an even keel. How it might mean that the crisis would be dealt with quickly instead of spending weeks and months on an acute ward.

Why did people feel the need for a crisis centre?

In the interviews we did for Oor Mad History, people told us that they felt that they weren’t treated well in psychiatric hospitals, they felt disrespected and unheard, that the professionals were only interested in symptoms and medication, and that they had no say in what happened to them.

As well, most community based services ran 9-5, Monday to Friday - which is not when most people have crises. What happens at 9 on a Saturday night or 4 on a Wednesday morning? There were no Intensive Home Treatment Teams then.

So the campaign began... when exactly it started is hard to estimate. Those of you who knew Tom Carey might think it began in 1911 or even earlier - I used to be annoyed by his exaggeration but I am a bit pedantic. I think now that he was trying to express the frustration of all the years of campaigning, and all the obstacles that were put in our way. It might not have been 100 years but it felt like it!

But one of the earlier milestones of the campaign was research which was written up in a report called Research into Mental Health Crisis Services in Lothian - in 1995! Yet it took till 2007 for the crisis services to start. 17 years.

I can’t now remember all the twists in the tale, but at one stage, the social work department had the money but NHS Lothian didn’t, and at another stage, it was the other way around. I remember working groups and steering groups. I remember people going on visits down to England to see how crisis services were run down there. I remember people studying a report called Being there in a crisis to learn what worked down in England.

However, the main problem from our perspective seemed to be the psychiatric profession. Not all of them but enough to make it difficult for us and our allies in the NHS and in the social work department.

“I remember we met with a psychiatrist who basically said ‘But how would they cope if someone came and they were drunk and they had an axe with them?’ p. 91 of OMH

Someone overheard the head of a mental health service provider saying something similar - that their organisation would not be interested in being involved because it would all go wrong when one of us attacked another service user or a worker.

At one stage, we were told there was funding for a telephone line and that we should take that and then see about a centre. We refused. A place for people to go to during a crisis was central to what we wanted. A phone line was not enough.

We campaigned during the local elections in the early 2000s - ‘we’re mad as hell and we’re not going to take it any more’. We had Councillor Kingsley Thomas, then chair of the health and social care committee, along to EUF meetings where we told him what we wanted and why. It was around then that we met Brian Cavanagh. The message we were being told was that they didn’t want to invest in “bricks and mortar”. In other words, no crisis centre.

However, our persistence paid off. Eventually, we found ourselves looking through tenders for a crisis centre from a number of organisations. Penumbra won the contract and in 2007 they started from temporary offices with a phone line and plans for the crisis centre,

But there were still battles to win - the planning committee refused permission for the lift which would have made most of the building inaccessible. But that was overturned under the Disability Discrimination Act.

How much would the early campaigners recognise their dreams in this building and in this service, I don’t know. But when I hear someone say they had good support from the crisis centre the last time things got bad for them, I feel we have all achieved something good.

To explain what this means in practice, someone who has used the Crisis Centre has asked me to read this to you.

‘I think from my personal experience a short time ago when I used the Crisis Centre and stayed overnight, that it is an excellent service. Not only are the staff in my opinion very very good, they are excellent at communicating. I think the fact that the only ‘instrument’ they can ‘use’ is to talk, which users find invaluable. However some professionals doubt this, they think it is a weakness that the Crisis Centre cannot prescribe drugs (though, of course, you can take your normal medication) and that it can be ‘risky’, I think this is its greatest strength. For example I was at the stage where I would probably have been sectioned and I know that in the Royal Edinburgh Hospital I would I would have been specially medicated. On the whole I would be only spoken to if I hassled the nurses or if I went to the duty-room with a specific request of the nurses, thus is the reality of the NHS; whereas in the Crisis Centre the staff stayed with me at all times and we talked until two o’clock in the morning. The next day I felt really able to face the world again and was very grateful to the staff. Also the building was extremely good, I had my own room, that has happened rarely at the Royal Edinburgh Hospital, and it was noticeable clean’.

Book review: Upstairs in the Crazy House by Pat Capponi

Eileen, one of Oor Mad History's volunteers, has written a review of Upstairs in the Crazy House by Pat Capponi.

“Upstairs in the Crazy House” is an inspirational autobiography written by a service user and mental health advocate of the Canadian Psychiatric system, Pat Capponi.

Pat gives a graphic and moving account of the unbelievable poverty and conditions endured by mental health service users. In tandem with this Pat also narrates her experiences as a victim of appalling child abuse who subsequently finds it difficult to fit in to “normal” life.

With a failed marriage and career behind her Pat finds herself discharged from a psychiatric hospital to a half-way boarding house where her empathy and compassion for the boarders saves her from suicidal thoughts, putting her energy into protecting service users rights, advocating for improved housing as well as fighting for changes at government level on mental health policy.

Pat went on to serve on many committees and continues the fight for service users rights.

If you have seen Working Like Crazy, you will have seen Pat in her trademark cowboy hat.

When David and Kathryn visited us in April, David gave us a copy of this book, her first. She has gone on to write many more books, including crime novels, and continues to be an activist in anti-poverty work.

Update: our Toronto visitors

Phew! What a busy couple of weeks we have had.

David Reville and Kathryn Church visited us from Toronto. They are both lecturers in the School of Disability Studies at Ryerson University.

Since Working Like Crazy came to the UK in 2001, CAPS and EUF have kept in touch with what is happening in Toronto.

When David visited Edinburgh in 2007, we asked him to talk about his course Mad People's History because we had been thinking about how we remembered our own history. It was great to hear about his course and about the Psychiatric Survivors' Archive Toronto.

This visit, David gave a talk called Working with Mental Illness. How people with mental health problems are denied opportunities for meaningful work, using his own story to illustrate his points.

On Saturday, David, Kathryn, OMH and some Edinburgh people met with two academics from the University of Central Lancaster in Preston.

Helen Spandler teaches on social work courses and Mick McKeown teaches on nursing courses. Mick also works with Comensus involving service users, carers and the wider community in the training and development of health and social care students. Helen is on the editorial group of Asylum magazine and also works with Survivor History Group.

And now we are busy thinking up ideas of what to do for the Scottish Mental Health Arts and Film Festival and for UK Disability History Month. Busy, busy, busy!

Oor Mad History - what next?

Oor Mad History at work

We had a great afternoon today, talking about Oor Mad History. Kirsten reminded us of everything we've done since we first got started in the summer of 2008 and then we talked about what we want to do next.

We came up with lots of ideas, most of which involved humour and creativity and how Oor Mad History can challenge stigma and outdated ideas about mad people.

So now we need to go through all the post-it notes and flip chart sheets and see what we can do.

Thanks to everyone who came today and to everyone who has been involved over the past few years. Onwards and upwards!

One of the constants at the Principles into Practice awards event was the use of the arts. Not just a way of passing the time, art - whether painting or writing or performing - is a way of finding your voice and telling your story.

And this is something we have been doing, especially at our exhibition last October. Jimmy Osborne's scupltures and photography stimulated a lot of discussion. We shared the space at Out of the Blue with exhibitions of art by people at Outlook and Equally Connected as well as award winning Much More Than a Label, CAPS PD project.

As well as Jimmy, other people involved with Oor Mad History are artists and writers. Sharon, a volunteer in the archive, is a writer and her book Prozac and Prayers was published last year. Jim and Anne both write as well and Anne has started doing comics. Who knows what other creativity exists?

We are now thinking about the future and how to use various arts - music, drama, visual art, writing - to record and remember our history and to tell it in new ways.

Any ideas? Leave a comment, or contact us at our new email address: contact@oormadhistory.org

Principles into Practice event

Yesterday we went through to Glasgow to speak at the Principles into practice awards event.

The Principles into Practice Network is part of the Mental Welfare Commission and "aims to promote care and treatment that is in line with the principles of mental health law."

Keith and Anne spoke about Oor Mad History, what we have done and what we hope to do in the future.

It was great speaking to so many people in the breaks about Oor Mad History and about their work. Anne spoke to someone who was involved in West Lothian in the early days - so maybe another interview is on the cards?

The highlight for us was seeing the CAPS PD project and the Self-harm Service at the Royal Edinburgh win the Service user participation and influence Award for their joint work.

Both the SHS and the PDP work are user-led and -directed services which support service users to have a direct impact on the care and support they need. Both projects were set up in response to service user lobbying about the gaps in support and services for people with a diagnosis of personality disorder.

 History continues to be made!

Our next event

Oor Mad History is hosting an event on 23 March 2011 at the Filmhouse in Edinburgh. 

The first phase of Oor Mad History is coming to an end so this is a great chance to celebrate everything we have done and look forward to the next phase. 

We would like to see all the volunteers and interviewees and hear what your opinions and ideas.

Contact Kirsten if you want to come along so we can order enough coffee and tea!

Holocaust Memorial Day - Never Forget!

Tomorrow is  Holocaust Memorial Day: "a time to remember those who have been murdered in the Holocaust and under Nazi persecution, in Cambodia, Bosnia, Rwanda and Darfur. On HMD we act to learn the lessons of the past to create a safer, better future."

It's theme this year is Untold Stories. The stories of the disabled and mentally ill people killed by the Nazis have not been told and so many people do not know about what happened. 

Nazi propaganda in the form of posters, news-reels and cinema films portrayed disabled people as "useless eaters" and people who had "lives unworthy of living". The propaganda stressed the high cost of supporting disabled people, and suggested that there was something unhealthy or even unnatural about society paying for this." Ouch

Ouch, the BBC's disability website explains what the Nazis did.

 

As does The United States Holocaust Memorial Museum.

There isn't a memorial anywhere for the disabled victims of the Nazis but The Chair: Holocaust Memorial to Disabled People is a project to work for memorials across the world.

Resistance a "moving image installation" about the Nazi genocide of disabled people, how some disabled people resisted, and making the connection with current issues such as pre-natal screening and assisted suicide.

Indeed, there is a lot of similarities in how disabled people are being talked about by politicians and in the media in the UK. We are "useless eaters" and cost society "too much". Even those of us who work and pay taxes are faced with increasing difficulties in keeping those jobs as Access to Work is threatened and the Independent Living Fund are axed. and Disability Living Allowance (which helps many disabled people to stay in work) is being scrapped for a more narrow benefit to be called Personal Independence Payment.

Holocaust Memorial Day is not just remembering the past but about learning from the past and taking action. 

Oor Mad History records what mad/mentally ill people in the Lothians have done to change things for the better. Mad people need to go on changing things and challenging the current assumptions about us.  And OMH will record them! 


Never forget!

Collective advocacy might be the term we have come up with but the concept of "a group of people who are all facing a common problem who get together to support each other" is not just found in mental health or other health and social care.

Here is a good example of collective action in housing in Edinburgh in the early 70s from the From There… To Here: The social history of Wester Hailes blog.

Wester Hailes is a huge housing scheme south west of Edinburgh which was built in the late 60s. 4,800 houses and flats but only 1 shops and nothing else. Of course people weren't happy - so the Wester Hailes Association of Tenants (WHAT) was founded.

“ If you were to go along to the Planning Department of the Corporation to say you thought there should be better facilities in Wester Hailes you wouldn’t get any further than a clerk at the front desk”

On their own they are insignificant and ineffectual. But there is another option. The power to demand to be heard can be generated by banding together and speaking with a single, united voice. It all boils down to a simple and stark equation:

“Bodies like the Corporation pay more attention to other bodies than they do to individuals. The bigger the body, the better the attention”

Many people who got involved in the early days made the connection between activism in other areas and their motivation in getting involved in mental health activism.

So in the late 70’s and early 80’s I was involved with politics , campaigning politics, left wing politics, anything-you name it I’d support it. Then I began to get fed up… sort of ‘what’s happened with the people like me?’ so I went to see there was nothing. It was like... there was this hidden thing. We were all supporting gay rights, we were all supporting Northern Irish prisoners, we were all supporting... John MacDonald

and

It really felt as if it was something major happening. It was a movement along with lots of other movements that were very vocal at the time like The Women’s Movement, the Black Movement. It felt like at last, folk were standing up, forming a strong alliance and making strong statements that were going to make societal changes. Be Morris

And today, history in the making, the anti-cuts movement seems to be making connections between trade unionists, students and disabled people to fight against the cuts which will have a huge impact on people with mental health problems throughout the UK.