I have posted various one- or two-liners about stroke and the health service, but thought I should probably be a bit more detailed.
Firstly, somebody having a stroke has almost a 90% chance of survival (i.e. surviving more than thirty days after a stroke), so there are lots of us about the place. According to the Stroke Association, there are more than 100,000 strokes in the UK every year, and around 2 million stroke survivors in total. Think about that statistic for a moment. 2 million. The UK has a population of 60-odd million, so that’s one every thirty of us. Stretching that somewhat, this means that when you see a football match on television, there might be a thousand stroke survivors in the crowd. But that would mean a uniform distribution of stroke survivors in the population, personally I don’t know any survivor who gives a hoot about football!
I know that for me, the physiotherapy I received in hospital was brilliant. In contrast, condultants (the top doctors) were irrelevant and the quality of the general nursing variable – literally from very good to very bad. For me, hospital ended pretty much as soon as I was on my feet again, although I came home in a chair and was very unsteady at first. And there the help stopped. Unfortunately, I’m judging the whole package – acute care plus the rehabillitation afterwards – so my overall verdict is “poor”. I’ve heard the same verdict many times over, although my knowledge apart from my personal knowledge, is anecdotal. I have also heard some good-news stories, somebody receiving appropriate treatment a matter of minutes after having had a stroke, or having a really high level of rehabillitation, so I think treatment could best be described as patchy. I think when you talk about a stroke strategy, the very first goal must be universality.
Going on to disabilities, although most people will survive, almost 2/3 of survivors will leave hospital with some kind of disability. In that respect, I am absolutely common! The current disability benefit, PIP, then comes into play. It is a points system – I get points for not being able to use my arm. I get some points for not being able to walk far because of my stamina and my dodgy leg, but not enough to affect my overall result. If my arm were OK, I wouldn’t get the benefit at all. I was quite surprised at how little the benefit was. To give a point of reference, my weekly benefit used to take me about an hour to earn when I was at the height of my career. I think this is entirely deliberate – disabled people are not high enough on the radar to matter, because he who shouts loudest gets the most attention. The level of care after a stroke, and of benefits, leaves me in absolutely no doubt that, if you have a stroke, the state just expects you to die. My benefit has reduced since the stroke, just because I’m getting better, walking further etc. In principle this is fair enough, because I need less help than I did, although my expenses haven’t really changed. If anything, they increased once I was able just to leave the house.
There’s another side to this too. I’ve been strong enough to go back to work for some time, but not really to travel up to London on top of everything else. So, I’m constrained to looking locally, which reduces the number of opportunities considerably. I can’t blame anyone for that, except the stroke. My own fault for living where we do. And, where I used to be able to walk into the top City banks and not only get a job, but be well thought of by my co-workers, I now can’t even get an interview with local employers. I can consteuct all sorts of reasoning in my head to explain this – that my experience was so specialised that local employers feel intimidated by my cv – but really, at that point, I’m just playing mind games with myself. The Stroke Association again provide some estimates here to help. If the likelihood of an able-bodied person being out of work for eight years is x, then the probability of a stroke survivor still being unemployed eight years after their stroke is 2 or 3x. Personally, I still keep an eye out still, but I busy myself writing my own software from home – keeps my brain active and might actually help people. I’m fortunate enough to still have a small amount of savings tucked away, and have the knowledge to kick off a project from start to finish just by virtue of my experience being my own boss.
As if getting back into work isn’t hard enough, I spoke to one woman once who had been made to sit on her own, away from everyone else, just in case somebody “caught” her stroke! Not a word of a lie, this is people’s intelligence. The last I heard, her union was acting on her behalf.
Please, in writing this, the last thing I want is sympathy, I just wanted to give an insight.