Mental capacity, circles of support and #JusticeForLB
My name is Pete – married with 2 kids and a granddaughter – and I was really sad to learn more about the way that LB lost his life. LB was surrounded by and lived with his loving family for almost all of his short life – I know this because I was able to use the internet to read some of the information posted by his mum – Sara.
Sara has written on her blog about choice and the role that the Mental Capacity Act played in LB’s life. It is fair to say that, although I attended training sessions on MCA in the past, I never really ‘got it’ until it became personal to my family (when my son Nick who has profound and multiple learning disabilities required a mortgage in his own name 5 years ago) that I truly engaged with and understood this really important piece of legislation.
It seems that my experience of not really ‘getting’ the Mental Capacity Act, is very common, so common that the House of Lords has spent the last few months summoning many people to give evidence about this lack of understanding. The medical profession in particular seems to struggle with a piece of legislation that is rooted in the ethics of the ‘social model of disability’. The House of Lords Select Committee has now collected lots of evidence that this is indeed the case in the real world at this point in time – and that seems fairly obvious once you accept that the medical NHS world is much more used to working within the ‘medical model of disability’.
The House of Lords Select Committee were quite clear in explaining that everyone involved in making ‘best interests’ decisions would need to be able to “show their workings out” – to me this meant that everyone making decisions that were within the scope of the Mental Capacity Act would need to keep a record of how the decision had been arrived at – just in case they might ever need to prove that they had complied with the Act but still people with extra needs are not fully understood or accepted by the system. Often the system doesn’t seem to have a logical and easy way of storing and using the information it asks for.
Over the years, many families have shared their stories with me. All of those stories had led me try and think about developing something better for my own family – something that would be easy and practical, but mostly something that would protect my son even if I was no longer young enough, strong enough to do that?”.
The solution for me was to combine some existing elements of the social care system in a new and innovative way that I call ‘Enduring Circles of Support’, we use a small amount of money from my son’s social services personal budget (around £600 per year) to pay someone to run and record ‘circle meetings’. The record of these meetings are in effect the ‘workings out’ as requested by the Mental Capacity Act, over time they build up into a ‘person centred audit trail’ which becomes a very quick and efficient way of allowing my son to interact with ‘the system’. The person paid to run and record the circle meetings has no personal agenda other than trying to get the best result for my son over the long term – and the knowledge that the circle members contribute towards every aspect of my son’s life is easily understood. This knowledge can be shared with those who need to know (social workers, health care professionals and so on) and they can see the workings out and shared by all those who the circle members agree need to know and see the ‘workings out’.
One of the questions asked after LB’s preventable death has been “what would justice for LB look like?”. For me, it would include anyone who wants a circle of support having one.
All of my own work around enduring circles of support can be found at www.peteandwendycrane.co.uk
Pete Crane
Big Society, Disability and Civil Society Research 