Building relationships with local politicians to campaign for better dementia diagnosis

John and Sarah have been together for almost 34 years, and during this time have both experienced the loss of a parent to dementia. In Wales, a lack of diagnosis data collection and publication means that people are missing out on vital support. 

Sarah and I met at Dartington College of Arts in Devon, doing our Arts degrees back in 1989. We were both mature students doing a course in 'Theatre Studies in The Community'.

We were married in London in July 1991, this being our second marriages, having both been married in our early 20's the first time around.

I have two amazing grown-up daughters from my first marriage, and Sarah and I now share them and our four wonderful grandchildren together.

Sarah became a dancer at the age of 17, and later became a stage and theatre actor, working with people such as Alan Ayckbourne and Richard Eyre. I became a professional actor in 1993, at age of 41, and did a national stage tour for 6 months in that same year.

It became apparent to me early on that the life of an actor is one of being away from home, possibly, for long periods of time. Having just married Sarah, I decided to put my acting career on hold and we decided to move back to beautiful Devon.

4 people stood with signs saying 'error: 404'

A new chapter

We both felt there was still another chapter of our lives to be lived and explored. 

Sarah decided that she wanted to pursue an MA in Creative Writing and graduated from Exeter University at the age of 70, in 2018.

We also decided to move to The Mumbles, South Wales, 20 months ago, which I must say, we now absolutely adore.  

Since moving here, we have continued our passion for making change. A hobby for me is being politically active, and not least, contacting my local councillors and indeed my local MP.

Sarah has acquired a theatrical agent and recently we both performed in a virtual film at Swansea University film studios, about delirium, in order to virtually/interactively train doctors and clinicians.

Becoming an Alzheimer’s Society Campaigner

Dementia is a cause close to our hearts. Sadly, my father developed dementia in his later years, and Sarah's mum was terribly affected by dementia, so it felt only right for us both to start campaigning for change

Sarah and I believe a timely diagnosis of dementia is so important for those affected, particularly in the early stages.

It is empowering to understand what treatment and support is available, and being offered, and why. It helps gain an understanding of dementia, how it may affect them in the future, and ultimately, how to live as normal and productive a life as possible.

When I was contacted by Alzheimer’s Society about the lack of dementia diagnosis data in Wales, I knew I had to take action, so I asked my MP and MSs to sign an open letter to NHS Wales. 

It is important to have an active relationship with our local politicians - they are our voices in their debating chambers, be that in Westminster or Cardiff.

I believe our representatives can only be effective when they have direct communication and an understanding of what their constituents and communities are experiencing.

They can then voice issues and concerns in their respective Parliaments, and influence decision-makers to put in place solutions to overcome those problems.

After campaigners like me and Sarah contacted their politicians, the Society’s open letter received signatures from all four parties in the Senedd – a great achievement!

We are one step closer to getting the data people living with dementia in Wales deserve. 

2 people stood holding a sign that says 'error:404'

John and Sarah handing in their open letter to the Millennium Centre in Cardiff.

Having our voices heard

But we weren’t done there! On the 13th of September Sarah and I travelled to Cardiff to make sure our collective voices were heard. It was a brilliant day, with the sun shining, we headed to the Millennium Centre to hand in our open letter. 

We were joined by Luke Fletcher MS, one of our local politicians and a signory of the open letter as well as members of the media, covering our story.

It’s been marvellous because we have been able to support something that is really close to both of us. And get across the message of dementia and what we have to do in the future about getting people to know how they can get a diagnosis of dementia and be supported.

- Sarah

What’s wonderful is that we’ve been at the heart of the Welsh Parliament where the message clearly needs to be delivered. In terms of my experience of the day it was beyond incredible. 

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1 comment

This is a marvellous and inspiring contribution to bringing positive attention to dementia and Alzheimers. Well done the both of you!!