Fandango’s Provocative Question (26 February 2020)

Yay, Wednesday already. Fandango is back to normal, and has just published this week’s Provocative Question. This week, he asks:

What is something you’ve long believed to be true, but you now realize is not true?

It looks like I am going to get everybody’s back up today (see previous post), so I might as well continue in that vein.

For many years I happily paid my taxes. I resisted the urge to move all my finances offshore, although it would have been easy enough to do so, and a good move in hindsight. I knew that a big chunk of my taxes were going into our NHS. I didn’t actually use the NHS, but it was an investment, wasn’t it? I’d be bound to need it one day, so it would look after me in the long run.

Rubbish!

I suppose I should have seen the writing on the wall a few years ago, when I broke my collar bone in a cycle crash. After five hours of waiting, I was advised to take two paracetamol and come and see them in six weeks at the fracture clinic. I didn’t bother. When Bradley Wiggins later had that exact same injury, he was operated on same day (privately).

Then the biggie, the stroke. What do you think happens when someone has a stroke? They get rushed through the Emergency Room, and they receive double-quick treatment, right? To break up the clot? Well, such treatment does exist, but you’d be wrong. They sent me home. They scanned (scammed) me, but could not detect that I was having a stroke, even though I was displaying other symptoms. So when I then presented again 48h later, by then unable to walk, the damage had been done.

I saw one of the doctors six months after the stroke. You could use a FES, he says. What the **** is a FES?, I say. I’d never even been told about it before. Functional Electrical Stimulation. Bottom line, it is something you wear on your lower leg, it applies a small current to make the muscle flex and it helps with your gait. Why did I not leave hospital with one of these devices six months earlier? They had plenty of time to assess me there.

Plus, this device used a bunch of wires. After I’d had it a week, I sent an email to the manufacturers with my initial queries and suggestions. Top of my wishlist? You should develop a wireless version of these.

We did already. You only get the basic model, because you’re NHS. It was true. I could go to their web site and if I shelled out enough extra cash, I could have what I wanted. In the end, trying to sort a bunch of wires going down my trousers flustered me so much, I gave the kit back.

Physiotherapy – one hour per month for six months, then nothing. An hour a month? I spend more time in the can!

And it’s not just me. There are national guidelines for the treatment of strokes, and when I used to attend a peer support group, every single one of us felt let down in some way.

Even now there is the Eye Clinic. A catalog of errors. Because I do not have transport, I have to ask for appointments that coincide with bus times. They won’t do that – I am supposed to have a car. So I miss the appointments sometimes. Yes, I am one of those bastards who misses appointments. What do they expect me to do? Walk there? Probably, yes, it is only 10 miles, I could probably get there in a day.

Then, the last time they booked an appointment, Please comee on Tuesday 1st. The notification dropped through my letterbox on Thursday 3rd.

So, this notion of universal healthcare is rubbish. The only reason people happily pay their taxes is because they haven’t had to use the system yet, haven’t discovered it is not actually there.

If you are not from the UK, I’m sorry for my rant, you must be bored witless by now. If you are from the UK, it is a lottery and I hope that your experinces have been better than mine.

Bitter and twisted? You betcha! It’s your own fault, Fandango, for inviting me! Next time, ask me about nice things like bunny rabbits!

But, you know when you have days and everyone else is just dancing to a different tune?

Charity Update

The date is still in my diary. Thursday, 2nd March, 2017. I had had the stroke a year before, I had been volunteering with the Stroke Association since christmas, and they suggested I attend a seminar. Always willing to learn some more, I agreed.

When I went along, I found role-playing instead. Let’s pretend we’ve had a stroke. So, how useful do you think I found that? Still, I like to be polite, so I thanked them, and went on my merry way, not betraying my thought that the event had been a complete waste of my time. I did, however, make a mental note to be more judicious in future.

And, in fact, in those early days, I was burned again. Not only by the Stroke Association, but also by people at the hospital, where I was meant to be training alongside the staff. People seem to feel generally that, when you do something voluntarily, that your time doesn’t matter to you.

2020. I’m a lot firmer now, in both what I think and what I say. I’m a lot more able to say, Nope, I will not allow you to waste my time.

About a month ago, the current co-ordinator said she would like me to attend another course. I felt lukewarm toward the idea but played along. She said that they wanted to talk about the GDPR. General Data Protection Regulations. On such a topic, I do actually need to be up to speed, so I showed willing. I was a bit baffled about the timing – the Regs came into force in mid-2018, so why leave it until now to say anything?

Yesterday, I received an agenda for this course/meeting. Item One: who are the Stroke Association? Item Two: what doees volunteering for the Stroke Assiciation actually entail? In fact, the meeting had also been entitled Volunter Induction Course. Induction? For somebody who’d been working with them for more than three years? For someone whose last stint of voluntary work was just last week? And, I’m sure you will have guessed by now, not a mention of the GDPR, although I’m sure it would’ve come up as a five-second aside.

There was another funny. A lot of stroke survivors, myself included, are left disabled. Climbing flights of stairs can be a problem – it is for me and thank goodness I live in a single-storey house.

The agenda for this meeting also said that it was taking place in a room on the third storey, and that the building had no elevator. So there is a problem straight away – how am I going to get there? It is not just getting up there – I would make it eventually, I’m sure – but what if the building had to be evacuated while I were up there? By the time I got out (if I got out), I can pretty much guarantee I would be somewhat crispier!

So not only am I left thinking that the course actually isn’t relevant, but that the charity has made it unncessarily difficult for me to attend. So, I declined the meeting. This is voluntary work, after all, I am doing it because I want to be involved. There is no obligation on either of us.

I got a very flippant email this morning, saying that the GDPR bit was included, and it was important that I go. And besides, they would provide lunch so what more could I want?! (Honest, she said that.)

So I was left a little incredulous. They organise this meeting that they say they want me to attend, and yet they put obstacles in my way to prevent me from attending. I mean, I could understand the public at large being ignorant of a stroke survivor’s plight, but not really the main stroke charity. And that last line tipped the balance.

I decided that there was no point pussy-footing around here, One or two things these last few months, I feel like I am almost on a collision course with them, so I have just said outright that I’m not prepared to volunteer for them any more. Solves their problem, solves mine. So that is that. Fini. No more Stroke Association, no more GDPR*. In fact, I spent a pretty sleepless night last night worrying about it, and this is just voluntary work, it has no right to stop me from sleeping.

* except that I need to be aware of it for my other charity stuff.


I suppose on a practical note, there are a couple of things I now need to update – this blog being one. There are a few notices I put on the site about volunteeering for them, which I’ll need to fix as I find, and put into th past tense.

😥