Getting to know Suzy Webster

Dementia UK’s Lived Experience Advisory Panel (LEAP) was set up in 2017 and is made up of people living with dementia and family carers. LEAP members use their individual and collective voices to influence the direction of the charity, ensuring that the lived experience of people affected by dementia is central to everything we do.

LEAP supports the work of Dementia UK as a critical friend, providing feedback and advice. Its members add their voices to our campaigns and marketing materials to ensure our messaging speaks to people living with dementia, their families and friends. They also help to raise awareness of our dementia specialist Admiral Nurses and their support for the whole family.

LEAP ensures we never lose touch with what matters most to people living with dementia and their families and carers.

I joined LEAP five years ago as Co-Chair. At that time, I was a full-time carer for my mum, who was living with dementia, in our family home in South Wales. Our experience of caring for Mum would have been very different if we had had an Admiral Nurse to walk beside us for the journey. There were many times we felt alone, abandoned, and like we were searching around in the dark.

I eventually found support through Dementia UK’s Helpline and ended up calling on multiple occasions. Mum has sadly passed away and I now understand the positive impact the support of an Admiral Nurse has on so many other families across the UK.

I was attracted to the post of Lived Experience Coordinator because of Dementia UK’s commitment to embedding the lived experience of dementia throughout the charity. My journey with Mum taught me so much about dementia and the impact it has on individuals and families. I would like to use that experience to create a network of voices who can positively support and advise the direction of the charity. I am passionate about using my own experience to support LEAP members to use their voices for influencing and raising awareness of Admiral Nursing.

My role is  a new role at Dementia UK to ensure the lived experience of people affected by dementia is considered throughout the charity. It’s not about ticking boxes or running ad hoc focus groups; it is a commitment to the everyday decision-making that will give great outcomes to people living with dementia, their families, and carers.

My role is within the Admiral Nurse Academy Team which supports the ongoing specialist professional development of Admiral Nurses. I will work with LEAP to provide insights and support with the practice development and evaluation of Admiral Nursing.

I will also be managing requests for LEAP involvement internally within Dementia UK to ensure that all members have a platform to share their stories.

I’m really excited to be part of the team and know this will make a huge difference to families living with dementia.”

During this exciting new phase for LEAP, we have put a hold on recruiting to the panel so if you would be interested in joining us in the future, please check our webpage for updates. LEAP (Lived Experience Advisory Panel) – Dementia UK