Wednesday 12 June 2013

The voices of experience

From left to right: Ming Ho, Sally-Ann Marciano, Professor Alistair Burns and Beth Britton (author, D4Dementia)
From left to right: Ming Ho, Sally-Ann Marciano, Professor Alistair Burns and Beth Britton (author, D4Dementia)

I recently attended a high-profile meeting in London to discuss the ‘Timely Diagnosis of Dementia’. The attendees came from a wide variety of health and social care backgrounds, from those currently practicing medicine in various different settings, to academics and experts. The interests of business and the charity sector were also represented making it, effectively, a collection of the great and the good of professionals involved in dementia care.

Amongst the audience were a handful of people with personal experience of dementia, myself included, who spoke briefly, while two people gave presentations about how dementia had affected their life and their family. One was a man currently living with dementia, the other was a lady who had cared for her mother with dementia. At the end of the proceedings, one of the key organisers of the meeting expressed his view that out of everything he had heard that day, the stories of those with personal experience of dementia had been the most revealing and left the greatest impression.

For me, those comments summed up how I believe health and social care, particularly but not exclusively in relation to dementia, must evolve. I wrote many months ago about the need to put people with dementia and their carers at the heart of all policy and decision making, and I wholeheartedly stand by that. Far more robust, workable, positive and cost-effective policy can be made if only the people who are, or have, lived through dementia take the lead.

My personal words to the meeting briefly recounted my father’s experiences, and those of us as his family, not just in relation to his diagnosis but throughout his life with dementia. I also made three direct pleas:

1)      For professionals to listen to people living with dementia and carers past and present.

2)      For policy-makers and implementers to formulate a holistic approach to dementia care.

3)      For professionals from whatever background to leave issues relating to partisan interests in their particular area of health or social care to one side, and put themselves into the shoes of someone who is living with dementia and their family/carer(s).

More progress is needed to improve dementia care, but in my opinion so much of that is being hampered by personal ambition and tunnel vision. Many professionals, however well meaning, can easily become very focused on how policy can personally affect their working life, without seeing the wider picture. Equally, others who have already opened their minds to the possibility of learning from the people that they see as patients or clients, have proved that it can be done and work so this is not an unachievable aim.

The picture with dementia is a vast one – not restricted solely to diagnosis or any other single element. During the group discussion on my table, a huge amount of focus was given to apportioning blame, passing the buck, and accusing colleagues from other areas of the health or social care system of failing people with dementia and their carers. In my view, all of this is vastly unhelpful in achieving an outcome that benefits the people who need support the most and yet often don’t have a say in the policies that affect them.

The three words I settled on to sum up my view were simply ‘Holistic approach needed’. A holistic approach to dementia from everyone involved in healthcare, be that in primary care, secondary care, academia, research or within the wider community - meaning in practice that everyone constructively works together. A holistic approach that joins up health and social care, so that people with dementia and their families have real and lasting support. A holistic approach that considers each individual with dementia, and every need that they have, not just in relation to their dementia but in relation to every other aspect of their life, including other medical conditions. And a holistic approach that considers the family, friends and network of someone with dementia, and how they are affected by having a loved one living with the disease.

Needless to say, my three words were not adopted by my group. Yet when I spoke openly to the room later on, they received support from other colleagues – a positive sign for the future I hope. In my view something has to give, not just regarding the diagnosis of dementia which is obviously a key issue in dementia care at the moment, but also in relation to the many and reoccurring problems that come from living with dementia. The lack of support, information and understanding. The need to defeat stigma. The need to listen to carers and respond in a timely, co-ordinated and helpful way. The need to remove financial barriers to accessing the care and therapies that enable people to live well with dementia. And last, but by no means least, the need to provide the sort of outstanding end-of-life care that everyone with dementia deserves.

I want to make a huge difference through my work, and I will continue to tirelessly represent the people who are walking, or have walked, the path that I once walked with my father. In my view our contribution is what will transform the dementia landscape in the UK and further afield, improving it for professionals and families alike. There is, and will never be, a substitute for the voices of experience.

Until next time...

Beth x

You can follow me on Twitter: @bethyb1886

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