Saturday, 18 February 2012

18 February 2012 - Maintenance Versus Recovery?

The recovery movement isn't new for some of us who have been recovering since the early days of our engagement with the psychiatric system, and speaking out for ourselves and others.  See Scotland the Brave and stories of the pioneering user movement in 1969/71, when 91yr old Archie Meek, a patient in an old style Scottish asylum said to his friend Tommy Ritchie, another detained patient: "Whit are us auld men tae dae if ye ever leave us - We're a divided frae yin anither. Kin ye no start up a Union afore ye go? Fur divided we fall.".

Nowadays we're seeing more of a top-down thing as governments are realising the cost of maintaining the biomedical model.  And the voices of survivors and people with lived experience are apparently held in higher regard although not always thought to be worth their weight in gold by the powers that be.

I'm a relatively new kid on the block in mental health activism terms although have cut my wisdom teeth on a lifetime of community development backed up by postgraduate training based on Freire's pedagogy - “Washing one’s hands of the conflict between the powerful and the powerless means to side with the powerful, not to be neutral.”.  For most of that time I didn't have an understanding of the political nature of my work in the community and would have said that I wasn't at all political.  It was all about getting together with others and improving community services.  Being a natural leader I tended to be the one chairing meetings, pushing forward the ideas with an eye on the horizon.  Running ahead and taking folk with me or sometimes going on alone.  As long as I wasn't being held back for this has always been my challenge.

I see the psychiatric system as being about maintenance as it's working on the premise of a biological cause, a genetic vulnerability and the likelihood of recurrence or relapse.  Sort of like a machine that has a tendency to break down when X, Y and Z are present so requires regular maintenance.  If you have one episode it's not too bad for then you might escape without a diagnosis.  In my experience the problem is when you have another episode and even another for then you are given the mentally ill label.  Which you might welcome and that is OK.  But not for me.  I want to be free to take the risk of running ahead and out of the system.

Because the mad experience is shared by most of us in my family doesn't mean we all see it the same way.  Some have been glad of the system's support and the help available along the way.  The diagnoses and drugs seen as part and parcel of staying relatively well.  Others of us have managed to walk or run out of the system with no recurring episodes or in spite of these.

I've always thought that a full recovery was preferable to maintenance so have chosen that path when able to, helped along the way by mental health services.  But I have to admit to feeling uncomfortable these days with the recovery movement from the top-down perspective rather than the grassroots one of emancipation and empowerment.  In Scotland and the UK people on benefits (government financial support) are being pressured to justify their disability or mental illness through ATOS and ESA (back to work) interviews.  Failure to attend or answer the questions can result in cuts to benefits.

The Hardest Hit campaign, organised jointly by the Disability Benefits Consortium (DBC) and the UK Disabled People’s Council, has been bringing together individuals and organisations to send a clear message to the Government to stop these cuts.   Inclusion Scotland aims to draw attention to the physical, social, economic, cultural and attitudinal barriers that affect the everyday lives of disabled people in Scotland.
Sometimes recovery from mental health problems will involve a level of maintenance by the psychiatric system and financial support from the government.  I want the right to choose my path through and out of the system and for others also to have the same rights and choices.  Therefore I contend that recovery and maintenance are not always on different sides of the fence.

Sunday, 12 February 2012

12 February 2012 - Advocacy: The Importance of Being Independent

In Scotland the Mental Health (Care and Treatment) (Scotland) Act 2003 says that "Every person with a mental disorder shall have a right of access to independent advocacy" and the term 'mental disorder' includes mental illness, dementia, learning disability and personality disorder.  You do not have to be in hospital or on any kind of order to receive independent advocacy and it is the duty of local authorities and Health Boards working together to make independent advocacy services available to those with a mental disorder free of charge.  See A Guide to Independent Advocacy

I've always understood mental health advocacy as a human rights movement, alongside user survivor involvement, a way of having a voice and being heard.  It is grassroots and user led with projects all over the country, some areas having more choice than others.  Autonomous but with the underpinning principles of independent advocacy.  United in helping people to take control or take back control of their lives wherever possible. The Scottish Independent Advocacy Alliance promotes, supports and defends the principles and practice of independent advocacy across Scotland.

In 2000 I worked in a voluntary sector (charity) organisation in Perth, Scotland, managing volunteers in a centre for carers and hub where other projects were also based.  It was the time of the 'The Same as You?' review of services for people with learning disabilities which was about helping people to be included in community life, education, leisure and recreation, day opportunities and employment.  I got involved in self advocacy groups of people with learning disabilities as they helped each other to say what they wanted.  They were invited to council meetings and spoke about how they would like services to be.  It was a great introduction to what advocacy was about and I enjoyed being part of it.  I also supported advocacy volunteers, at that time they were unpaid, and had advocacy 'partners' myself, people who had asked for someone to advocate for them.

One of the advocacy partners I worked with was a young man in a forensic locked ward who had come from the prison and had narrowly missed being confined in what was once called the penitentiary, now state hospital.  He needed help with writing letters and saying what he wanted to happen, to have a voice.  These letters went to hospital doctors and management.  It was also an opportunity to build a relationship with him as a person.  For I think this is an essential part of being an advocate, finding out about the person, not just their situation but their hopes and plans.  Getting alongside them.  This young man eventually was discharged into supported accommodation in the town, then his own flat.  When I last spoke to him he had started to volunteer at the base where I used to work.

Another person needing advocacy support was a young woman with Friedreich's Ataxia, an inherited disease that causes progressive damage to the nervous system.  Under the direct payments scheme she employed her own team of support staff 24/7 rather than receive services from the statutory agencies.  I was asked to provide advocacy support and to do an inventory of her possessions, in her home where she lived in the community.  When I first met this young woman she gave me a copy of her personal story that she'd written and printed in a booklet.  This helped me to understand something of her life story up to that point.  It took me longer to work out what she was saying as her speech had become slurred.  I did worry if I'd manage to hear what she wanted but as I got to know her it became easier.

The reason for her advocacy request and inventory was she suspected that some of her possessions had been removed by a person on her care team, new items that had disappeared.  She wanted an inventory made of all the possessions in her house so that she and others would know what there was and keep a regular check on this.  We worked together on this task and I met different members of her care team during this time.  The young woman talked about the items that had gone missing, some of them gifts from friends.  She had support from the statutory agencies in managing her care team but wanted someone independent to work on the inventory task.  During the time of this task she had to go into a nursing home for respite and I visited her there.  It wasn't the best of places and the cleanliness was suspect.  We talked about this but she was only there for a short while so didn't want to complain.

I've told these stories to show the importance of 'independent' advocacy in the life of a person who is vulnerable and has difficulty communicating their wants and needs.  For someone in a locked ward of a psychiatric hospital where freedom is restricted and there may be seclusion rooms, forced treatment and restraint, advocacy might be the only means by which the patient can be heard.  And the project providing the independent advocacy should be 'independent' and that means no conflict of interests.  In Scotland mental health advocacy is mostly funded by local authorities and health boards who also fund other mental health services.  However the recent introduction of tendering of advocacy services has opened the doors to other organisations bidding for the work, including English service providers that claim they are independent because they don't provide services in Scotland.

That's what happened in 2009 in Fife where I live, when the local advocacy groups lost out at the tendering process to an English service provider.  And I campaigned at Scottish Parliament with the local collective advocacy group in May of that year, against the tendering process in Fife, which we maintained was not fair or transparent.

I believe that in Scotland we need to keep our historical, grassroots, user led, independent advocacy groups that can be completely free from conflict of interests.  Not aligned to service provision in any form, and that includes England.  When people are in crisis and in locked wards with the threat of restraint, forced treatment and seclusion this is when independent advocacy is crucial.  We don't want or need a 'chain' of advocacy projects under the umbrella of an English service provider.  It's up to local councils and health boards in Scotland to recognise the voice and value of the grassroots, user led, mental health advocacy projects and to uphold the independence of advocacy.