In their visit to the Forget Me Nots, people with dementia talked about their changing experiences of making decisions. One person said ‘It’s like the door is slowly shutting’. Some people’s comments suggested they were content for their loved ones to make some decisions – ‘I was the main decision-maker … but now my wife can think it out better than I can’ – and some expressed feeling more ‘fragile’ and wanting to be protected. However, other people’s views on other people making decisions were less positive, one person said, ‘My wife has made decisions for me … it doesn’t feel good. I want to make decisions’.
Much of the evidence focuses on experiences of people dealing with bureaucracy – banks, making Lasting Powers of Attorney (LPAs), etc. Some people expressed frustration with the cost and difficulty of making LPAs, some saying that it could be difficult to find somebody to act as LPA. Most agreed that LPAs were important, but a lot of people found it hard to get around to making one. There was a general feeling that there was insufficient information about the MCA, and some people didn’t like the terminology of the ‘mental capacity’ because of the association with mental illness. Others didn’t like labels like ‘carer’ or ‘suffering’, one person saying ‘We still care for our partners even when we have dementia’.
The other evidence from a person with first hand experience of the MCA comes from Simon Cramp, and is on p478 of the first volume of evidence. Simon describes himself as ’42 years old and I have a learning disability and dyslexic and dyspraxia’. Simon is also a fellow of the Centre for Welfare Reform; I once had the pleasure of meeting Simon at a Housing and Support Alliance conference, he is a very active campaigner for rights to inclusion and self-determination. Simon submitted evidence to the Joint Committee on the Draft Mental Incapacity Bill (
he’s listed here, but I am unable to find a copy of his evidence online and my past efforts to obtain a hard copy of the evidence to the Committee have been unsuccessful, sadly Simon’s evidence is here and here; thanks TH!). He was involved in campaigning for some important changes to the original Bill, including getting the name changed from the Mental Incapacity Bill to the Mental Capacity Act; he also helped to campaign for the inclusion of advocacy (hence the IMCA service). Simon thinks that the impact of the MCA has been limited: ‘after the great fan fair apart from court cases you hear very little in the media or online’.
Simon is critical of the quality of available online information about the MCA, and the depth of detail in the code of practice (he asks whether anyone except professionals ever read it). He suggests that the government should issue pocket book or cards, summarising the Act’s core principles and people’s responsibilities. Simon thinks there needs to be a publicity campaign on the Act, and that it might need updating to deal with developments in adult social care. He is critical of professionals’ understanding of the MCA and he doesn’t think it has fostered appropriate involvement of carers and families in decision making. This is what Simon has to say about the accessibility of the Office of the Public Guardian and the Court of Protection:
‘…it a joke that everything has to be fill in online as in my book if you have a disability and struggle to write this in a way that is easier for you. Then the issues about it more accessible online is laughable it about government saving money which is not what the prinpalables is about this act it about giving people choice.’
So, more food for thought from both Simon and the Forget Me Not group on the need to make the information and the administrative and legal apparatus of the MCA more accessible.