It’s my birthday coming up and I’m giving something back as the stroke association have really supported me. Hopefully all of my Facebook friends will dig deep but let’s see!
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Hi @garethc970
I saw that you put a Trust Pilot review up too 
It’s great that you’re coming on leaps and bounds and feel that you’ve got enough to be giving credit to the organisations that have helped That’s great
I’d welcome your clarification on a detail; is it the Stroke association directly or is it the folk in this community and if it is the stroke association is it again volunteers who come together under the banner but are actually independent volunteers? Or directly employees
Thnx
Caio
Simon
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@SimonInEdinburgh Id say all of the above with folk on here and 2 of the direct employees as well as a volunteer who runs the back to work group (their name escapes me now)
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Hi @garethc970 happy birthday for when it arrives. Really pleased to hear of the great support you’ve had & that you are doing something to give a little back.
I too have had great support from different areas of the Stroke Association especially in the early days when I hadn’t a clue what was going on.
Best wishes
Ann
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Ann (& Gareth) what areas gave you what support?
I only ask because I have had none but then I do live in Scotland where the stroke association does not hold contracts under which it is paid to provide stroke support services within the stroke care pathways.
Clearly the stroke association provide the infrastructure on which this Discourse forum runs (i think from something Clement said long ago that they use a content delivery network service so they pay for a subscription but they could run it on in-house servers themselves - nothing in the report & accounts itemizes any distinguishable costs)
They provide the Helpline, the Here For You service, they administer the Stroke Group Network which is local support groups who can be affiliated very loosely or funded and administered on a much shorter leash but still by volunteers.
The website mentions the fact that they are paid by the NHS in England Northern Ireland and Wales (so less charity than business exchanging a service for a fee) and mentions
- a Communication service (I assume this was one you used to Gareth ?),
- Emotional service,
- Post stroke review service, and
- Hospital to home support service.
From memory the accounts suggest they spend about 17m £ But it doesn’t record how much income they get from providing, No mama the number of people served normally satisfaction ratings.
It would be very interesting to hear from folk who have been involved with any of these because my profile says I’ve read 29,700 posts and the list above is the FIRST TIME I have seen ANY of 1, 2 & 4 services mentioned by any forum user, and only once have I heard of 3 and that was by @KGB in the context of surprise that nobody else seemed to have had them
Caio
Simon
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I have had the benefit of a few different services. I have used the helpline for advice, i attend their online activities when i’m able to now but used a lot more frequently in the past. I’ve been involved in some of their promotional stuff (featured my story in their magazine, on the forum blogs etc). I also had a number of visits from a Stroke Association Support Coordinator who was fantastic & helped me with questions I had, provided information leaflets but more importantly for me liaised with my GP & Stroke consultant to unblock some things for me. And of course I use the forum & do a bit of moderating on it.
They were there when I needed them most & I will remain forever grateful to them for that.
I know the support coordinators aren’t available everywhere but where they are I’d suggest using them. I was referred to them by the hospital when i was discharged.
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Initially they came out and advised I should apply for pip and said if there was anything else to get in touch, then they ran a communication group and while I was the only one with dysarthria it let me see how others with communication issues were living and making it all work and was a safe environment for me. My 2 main sources of assistance were my local co-ordinators in Sunderland.
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I’m glad you both had their support when you needed it:)
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