An increasing number of people with dementia are influencing a range of local and national work through the Alzheimer's Society’s service user review panels (SURPs).
It is hard to recognise Linda Willis from her description of herself five years ago, when she was diagnosed with vascular dementia.
'I didn’t want to discuss my condition, or even talk to anyone in case I said something wrong and would be laughed at.’
Linda, now 67, is a very vocal member of our service user review panel (SURP) in Blackwood, Gwent, sharing views on everything from policies and training packages to making museums more dementia friendly.
Fellow member Gavin Watkins, 58, talks about a similar transformation since his Alzheimer’s diagnosis in 2010.
'At one time I didn’t want to leave the house but I’ve come out of my shell. It’s completely turned me around.’
SURPs provide a way for people with dementia to have a real influence on what Alzheimer’s Society and other organisations do.
Bethan Morris, Dementia Support Worker, says,
'SURP members have incredible views and experiences, and are able to offer so much knowledge to feed into the development of services.
'The great thing is that people with dementia on the panel are listened to.’
Denise Saunders, another member of the Blackwood SURP, says that any fears she had about taking part disappeared as soon as she turned up.
Denise, aged 61 and diagnosed with Alzheimer’s four years ago, says,
'I love going along once a month, I’ve met lovely people there.’
In addition to the Society’s work, Blackwood SURP members have had their say on efforts to make theatres accessible and to improve dementia care in Wales.
One highlight was the opening of Cwmgelli Lodge, a specialist centre for younger people with dementia that includes respite and longer term accommodation. SURP members helped to choose everything from carpets to door handles, and they now meet there each month.
'The new building is absolutely amazing, beautiful – we’ve all picked out our own rooms for when we might need to stay!’
To other people with a diagnosis, Linda says, 'Focus on the things you can do rather than what you cannot do.
'Try new things and you will be amazed at what you can achieve.’