The Prime Ministers Dementia Challenge – Meeting with Huw Davies

Houses of Parliament – 25 June 2014


I’d like to start by saying some big thank yous.  Firstly to Ian Sherriff of Plymouth University, who asked me to be on the team and for the brilliant research work that he does and also for amazing energy and passion for improving the lives of people living with dementia.  Secondly to the wonderful Dr Stephen Pearson, consultant psychiatrist, who was the other member of the team, who went to London on 25 June 2014, he has fantastic insight into the work we are doing on the Prime Ministers Challenge.


I’ve been part of the Prime Ministers dementia challenge team for some months now, the team are looking at improving the lives of people living in rural communities.  So to explain the work that we do and to gain cross party consensus, the thee of us (Ian, Steve & myself) all went to the Houses of Parliament to meet with MP Huw Davies, Shadow Minister for Rural Affairs.  So the next huge thank you is to Huw, who met us for 90 minutes in a room off the great hall, where we talked to him about the work we have been doing in relation to rural affairs.  He had no aids with him, it was just him and he listened carefully and showed huge interest in the work that we have been doing.


Ian talked about the overall work of the team and how it has been progressing and Steve talked about how different models of the care services, whether it is the NHS or Social Services could work differently, better and more effectively for the benefit of the people living with dementia and how their lives can be improved.  Importantly with the key aim of keeping the needs of the individual at the heart of the matter, which can get lost at times when the negotiations between the various bodies go wrong.


I then talked about the work that I had been doing, which relates to the Human Rights implications of people with dementia wearing a GPS tracker.  In order to create a robust opinion I have sought the help of the brilliant Senior Judge Denzil Lush of the Court of Protection and the fabulous Claire de Than from City University London.  So my next thank you goes to those two amazing people for their help.


In principle it is fine for someone with dementia to wear a GPS tracker, if their carer considers it to be in their best interests, but it is appropriate that the person is tracked in a way that is the least restrictive of their rights and freedoms.


The 2 main issues that I see are, firstly that someone with dementia will wander and have a serious accident or will be killed and it may still be OK that they wear the tracker.  Accidents happen, they happen to people all the time and people are accidently killed every day in the world.  It’s not a good thing, but it does happen.  Accidents happen.  So just because someone has dementia, why should they not be allowed to take a certain amount of risk, like the rest of us do every day when we cross the road, or get into our cars.  When the risk is overwhelming, we shouldn’t do it and nor should someone with dementia.  It is about balancing the risk, but to be too risk averse just because someone has dementia would be to interfere too much with their privacy and freedom.  So we have to accept that there is some risk, but if it is important to the person with dementia that they can have freedom to roam, then we accept that that is the price they pay to retain that freedom.  Most people with dementia that I have spoken to would fear a controlled risk free life more than the risk of an accident.


The second issue is that the carer will use the tracker too oppressively.  And a good example of this is a husband and wife.  Ann has been carer for her husband Andrew and is part of the Prime Ministers challenge team.  If Andrew were to roam and have an affair, then he should have freedom to do so, even if Ann, his carer, doesn’t want him to (and for Ann and Andrew’s sake, I hope he chooses not to!!)  If Andrew did have an affair, it isn’t illegal and Ann should not use the GPS tracker to interfere with Andrew’s freedom of association, to do so, would be a breach of his human rights.  But it’s very hard for Ann not to interfere, as there is a conflict in her role and carer and her role as wife.  The issue may not be an affair, but the person with dementia has freedom of association, so should be allowed to go where they want and meet with whomsoever they want, as long as it isn’t illegal (like the rest of us do).  So next thank you is to amazing Ann (and Andrew) for the discussions I’ve had with her.


The wonderful Baroness Christine Crawley sat in on the meeting with Huw and endorsed that work that Ian and the team have been doing.  When the meeting broke up, she kindly took us for a quick cuppa before she had to speak in the House of Lords.


So having had a great meeting with Huw, then came the slightly surreal moment of being walked at a brisk pace through the House of Lords, seeing Lord Sugar and Baroness Floellla Benjamin on the way in the corridor!! We had a quick cup of tea in one of the lounges before Chris escorted us off the premises.  So my next thank you goes to the very wonderful and gracious Baroness Christine Crawley for her kindness and support.


Final thank you to The Alzheimer’s Society, who are supporting the Prime Ministers Challenge.


I had a great day in London and hope that the work that the team is doing will influence the people in power, whoever they are, in whatever organisation, that can effect a change wherever they may be to make the lives better, for people living with dementia.