Hearing the Voice of the Person

Featured article - 25 July 2016
By Rachel Griffiths, Mental Capacity Act and human rights consultant

It is my belief that the Mental Capacity Act is one of the most important pieces of law for people affected by dementia. This is for various reasons. The MCA provides people with decision making rights, it enables people to plan ahead for their future for a time when they cannot make decisions for themselves, and also ensures that when decisions are made for them that they are still involved and these decisions are in their best interests. From the very start, Baroness Finlay, the Chair of the Mental Capacity Forum, highlighted the importance of the views and experiences of those directly affected by mental capacity issues. I feel most fortunate that she has asked me to lead on this area for the Forum.

There’s a real risk that lots of professionals will argue merrily among themselves (as I fear we sometimes do) about the finer details of the law around mental capacity and lose sight of what’s happening in the lives of the people the laws are there to empower and protect. When things go wrong in someone’s life because the MCA isn’t properly understood and followed, it’s the people whose lives have been affected who will never forget.

Someone with unhappy personal experience of the MCA being misinterpreted said to me:

The things professionals think are important about the Act aren’t always the things that matter most to those of us who rely on it to protect our freedoms, or the freedoms of people we love.

For an older person wrongly assessed as lacking capacity to decide where to live, the option to return to their own home may well have vanished by the time this injustice is put right - if it ever is: their home may have been sold, or their health may now have deteriorated to the point that they can no longer live independently. The ship of their autonomy may have sailed. And the best way to ensure that decisions are made within the MCA’s ‘golden thread’ of respect for the people living with it is to get the basics right. This means often checking our thinking against the five Principles of the Act, and bending over backwards to learn what people want, see their unique perspectives on life, and make their personal frameworks of history, culture, preferences, and wishes central to any interventions we need to make in their lives.

The judges keep reminding us of the importance of the individual’s wishes in best interests decision-making. We are all still learning, I think, how best to work within the empowering ethos of the MCA, rather than fall victim to the risk-aversion and paternalism identified by the House of Lords MCA committee in 2014. A good starting point, for all of us in the Forum, is to seek out and learn from the lived experience of those with personal knowledge of the MCA. Do please tell us of good examples of how you have made this happen, so that we can share them more widely.

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