The Role Of Supportive Communities

Dr Crippen has written several entries in his diary for this week that elicit both sadness and anger. Sadness for the predicament of the patients who consult him and anger that the resources are not available to help them. In the Thursday 18th entry for the diary, Dr Crippen poses the question:

What happens to children with learning difficulties? They become adults with learning difficulties. Because they are grown up, people do not realise and are less tolerant.

We learn about Patrick who is 42 and has learning difficulties. Patrick is currently not working and when he is cross he hits people. Patrick does not meet the criteria for help from the local mental health departments. His local 'regular' psychiatrists do not work with people with learning difficulties: his local learning difficulties psychiatrist had diagnosed a Borderline Personality Disorder which Dr. Crippen translates as, "I can't help you and I don't like you."

Patrick would like some counselling but there is none available to him. Patrick knows that he is bouncing around the system like a pin-ball. Dr. Crippen has grave concerns about the sustainability of Patrick's position and writes letters to the psychiatrists and his local Community Mental Health Team.

you are all playing pass the parcel with this man. I think there is a grave danger that one day he will kill someone. Can no one take ownership of the problem?

The following day, the Friday 19th entry, Dr. Crippen meets Andrea. Baldly, Andrea is not coping. Her family is far away and she can not herself to tell them what has happened over the phone. Dr. Crippen's assessment is that in addition to appropriate support, she needs interventions as basic as a supportive environment and an appropriate hug.

Andrea is a highly intelligent university graduate with low-self esteem and bulimia who is self-harming and has been raped. She is not potty. I do not thing [sic] she is suicidal. She needs help. She needs sympathy. She needs support. She will get none of it.

Why do people like Patrick fall through the cracks? He has obviously made some excellent efforts to work and be independent. Why does he qualify for so little help because he has learning disabilities and the non-diagnosis of borderline personality disorder when some councils and Primary Care Trusts (PCTs)have gone to extraordinary lengths to meet the needs of people like Pamela Edwards - a woman with dissociative identity disorder (like Patrick's diagnosis, not something that seems amenable to treatment). Pamela can pose a threat to herself, and her care is estimated to cost in excess of £500,000 p.a.. Patrick seems to pose a threat to himself and others, yet there seems to be so little available for him. Why is there such a disparity?

Similarly for Andrea. People live complicated, messy lives: we can be overlapping Venn diagrams of events, needs and conditions that would be neater if they were exclusive, but they aren't. Why are there so few appropriate resources for her? Some PCTs have crisis intervention centres. Would these help people like Andrea or would there be similar problems involving protocols and the semantics of crisis?

Many faith-based organisations (e.g., Roman Catholic or Buddhist) used to offer places to people with secular problems in retreat houses and communities. They gave support, help and sympathy and allowed people to mix or remain apart from the community as they wished. A number of them had members who were qualified and experienced counsellors or psychotherapists. People continued to work in their usual settings where that was appropriate but stayed in the retreat house.

Some lay communities take in people with addictions. They board people in their homes and support them through an addiction treatment programme. Organisations like Camphill have adult communities. People with special needs can choose to live in a mixed community where they play an active part in community life. Some of the adult communities are large, with a number of houses and craft workshops. They may have a bakery, coffee shop, dairy farm, general store, gift shop, laundry and a visitor centre. Others are much smaller and consist of few houses in a local community. They may be home to people who go to work or college on a daily basis and to others who work exclusively in the community itself. Some of these adult communities also offer work, educational and social opportunities to people who live locally in their own homes.

The ethos of these houses and communities seems like an extension of the victorian asylums and farming out. There are records of the sums of money that used to be paid to people who took in and cared for others.

An exceptionally high figure, 7/- a week, was paid to Edward Grey, farmer, for the care of Catherine Williams because she was "dangerous to others" and "of dirty habits". For Ellen Davies, a harmless idiot also boarded with Edward Grey, only 2/9 a week was paid.

Malcolm Gladwell wrote a provocative piece that asked, What Is The Cost Of Doing Nothing? There are safeguards to protect people's civil liberties and the first results from 'wet-houses' and accommodation programmes indicate that chronically homeless alcoholics are harming themselves less and have lower public costs than they did when they were left to their own devices.

What are the emotional, financial and social costs of doing nothing for people like Andrea and Patrick? What would be the costs of a secular supported community that resembled the Camphill model? Somewhere that offered a shared community life or allowed people to work outside and then return to it: and, offered not just personal support but access to counselling or psychotherapeutic services? Arrangements like this would not suit everyone but they would suit the needs of some people. Camphill communities are not cheap - but for the people who live there, they provide tremendous value. Similar secular communities would not be cheap, but they have to provide more than current resources. And they must be better value than the current cost of doing nothing.

Copyright 2006, Tony Plant Happystance Project