SURP…just another meeting?

Five of us
Sitting around a table of water jug and tumblers
Post it notes


Sound familiar?

Another working group?

Another consultation?

Well, no…

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.

Singing for the brain? Hmm, bit off piste.

Peer support groups? They’re well past it too. They don’t talk at all and can’t answer questions.


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.
Use it.

Click to access documents.php

And commissioners…

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
Our feelings
Our anxieties
Our passions

You’ll buy…
Dementia advisers
Admiral nurses
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?


Please, don’t send me to Day Care

day careIf you search in for an image to match the term ‘Day Care’ you mostly only find images for children day care services and centres, as per this image I have added today! I wrote the following for a friend and colleague, to read out at a conference who is attending soon with an audience of life style and activity co-ordinators.

“Let me begin with the word ‘day’ used in ‘day’ respite.

Many people with dementia, who are over the age of about 5 or 6, feel the use of the word ‘day’ program, ‘day’ respite, or ‘day’ activity centre, is little different to the use of the term ‘day’ care that we took our pre school children to.

It is, in itself, infantilising us before we even get there, and many with dementia would simply refuse to go to any respite program with the use of the word ‘day’ in it.

Let me finish with…

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