Five of us
Sitting around a table of water jug and tumblers
Post it notes
Another working group?
This was the first meeting of a SURP in Shropshire.
Service Users Representative Panel
Run by Alzheimers Society, following a pilot two years ago.
How do you get the views of people with a disease about their journey
Or about services
Or feedback mechanisms
Or challenges in the community?
You ask them
How does a commissioner find out what
People with dementia really think
Away from their carers and family?
Oh my god, we can’t ask people who can’t remember what they ate for breakfast.
We can’t rely on people who don’t know what day it is.
Where can we go anyway?
Dementia cafe? They’re well past giving opinions about care and support.
So what do we do?
I know, read a report from RCGP or NHSE and commission from that.
Quick and easy. Wow. Saved time there.
People with dementia who are brought together to talk about their lives
To reflect on what is good
What would have helped
What, when, where, how…
People who need a little time, support, understanding
People who get to know and trust each other
Who meet every month for an hour or two
Who decide their agenda
And who can find the answers they and we are looking for as they comb through their memories, lives, feelings, dreams, images…
Have a look at the study report on the pilot.
Put aside some time to do this and you’ll find what you’re looking for.
The Holy Grail
You’ll buy dementia services which a lot of people want, value and use, and you’ll save a lot of money in the long run.
You’ll have heard our stories
Peer support facilitation
Shared electronic records
You’ll make sure we all have a shared care and living plan, which we have co-created.
You’ll work with community transport to make support accessible. And buy buses where there are none.
You’ll buy respite care for carers before they reach crisis.
And for those 400,000 people living in the community in England with dementia
You’ll know you made a real, big difference.
What’s that worth?