I was chatting to a woman the other night, a friend of a friend, who is involved with running the stroke group in Harlow in Essex, on the outskirts of London (I think). Their stroke group has over 275 members, she says.
I couldn't help thinking of the last peer group that I went to, when four of us turned up.
Reasons? Well, maybe it is that people think we're a bunch of idiots, and they decide
it's not worth coming, but to come to that conclusion, you'd have to
make at least one visit. I mean, I do think there are a few people who fall into this category, but only two or three. Possibly as many people again who are irregular attendees, just because they're recovered enough to have other commitments such as jobs.
Salisbury is a city, so there is some kind of "target audience" within reach, surely? Certainly, I visit the stroke ward regularly and there's never a shortage of people in there. I mean statistics say that the vast majority of strokes aren't fatal, so surely it's reasonable to assume that the people I see in hospital will sooner or later be living outside of hospital. But there again that statistic can be obfuscated - a single stroke may be unlikely to be fatal, but what about when someone has several strokes? Those odds must stack up, so perhaps fewer people actually survive to make a recovery than we think? I wonder how these numbers are counted?
But Salisbury District Hospital covers an extremely large catchment area in terms of square miles, most of which is rural, and some of it not even in Wiltshire (which skews a little the traditional county boundaries of e.g. the Stroke Association). Even places which you'd say are not rural, the public transport is very poor (in general, although this is consistent with my own experience) so an individual's mobility becomes a factor. Certainly it is undoubtedly easier to get about, the larger the city.
I suppose another thing is what the group actually does. At our group, there is no organisation (something I like), we drink coffee and just talk about "stuff" for a couple of hours. The content may be stroke-related, maybe not. There are no constraints. I was signposted to the group by my then Stroke Association co-ordinator, but there is no Stroke Association involvement on a session-by-session basis. This other group does thinkg like speech and language, and chair-based exercise, classes - all brilliant for stroke survivors in general, it sounds like these Harlow organisers do an excellent job, but possibly not so much to the specific people who currently attend in Salisbury. And, I suppose, there are a couple of other groups in my area which cater for someone with those requirements, although personally I prefer the far looser content that our group has, and it happens to be in a more convenient location for me.
Maybe the reasons are more straightforward? Strokes generally leave people disabled and with limited mobility, so maybe they just end up feeling too isolated? That seems fair enough, but a couple of the Salisbury attendees use wheelchairs - one of them lives outside Salisbury and relies on a couple of carers to help her daily, including transporting her to our meets. So presumably it requires a not-insignificant amount of effort for her to come along. And then there's me - I obviously have my issues but I'm sufficiently determined to go to these events, and sufficiently able, and am sufficiently lucky to have public transport available to me. But maybe somebody's willpower plays a part?
It's a difficult one. If I were in a position to do so, I'd like to try and tease some of these answers out, obviously with a view to increasing attendance at our peer coffee group. But maybe the people best-placed to be able to get in touch with someone would be the ward itself? (i.e. someone who already held names and addresses and is already familiar with data protection issues, contacting them maybe six months after discharge?) But there again, the NHS probably has enough on its plate as it is. Plus, we're now in the realms of social care, not really acute care. Certainly though, just knowing that you're not alone in your predicament is a big step forward. All around me, I see organisations (including but not limited to the NHS) that have been diluted down so much that these issues are far too "big picture" to really be solvable. And, in my position as a humble volunteer, I can (and am obliged to) shrug my shoulders, so this is just a thought experiment.
This post was a bugger to write today, by the way. Very stuttering - I had a vague idea what I wanted to say but it was only really by writing it down that I've been able to get it clear. I hope!
If anybody happens to read this post and is interested in coming along either to the Salisbury or Harlow groups. then please get in touch with me. Even if you're not in either area, I can ask the Stroke Association, on your behalf, or you can contact them directly.
BEFORE YOU START: Please note that although I currently volunteer for both the Stroke Association and Age UK, the views expressed in this blog are strictly my own. I am not a spokesperson for either (or, indeed, for any) organisation, and I accept complete responsibility for the views expressed herein. I've tried to use the Glossary to explain any ambiguous terms, but if you think there is anything I've missed, please message me.