Category: Disability

Am I Being Unreasonable?

As the UK is coming out of lockdown, so too are we – my wife and I. Only slightly – I want to make sure that all the cards are stacked in my favour before resuming my old life.

With that in mind, we had a garden-guest around last week, a friend of my wife. I can’t remember how we got there but the conversation somehow got to post-lockdown behaviour. I said I’d be far more comfortable coming out of the house if I knew there were no cases in our local hospital.

Okay, if there are no cases it does not necessarily mean we are [i.e. the vicinity is] COVID-free, but if we did have enough COVID cases, I’m sure some of them would end up in the hospital, and counted in the statistics.

It so happens that the husband of this friend works up at the hospital. Ah, the friend says, Rob gets an email every day, telling him exactly how many current COVID cases there are. My response was simply that this kind of information should be in the public domain.

These last few days, therefore, I have spent time poking about on the web, to see if this information is, indeed, available. I couldn’t find it, so I ended up asking the hospital themselves whether they publish numbers.

This morning I received a reply. No, the numbers aren’t published because it might breach patient confidentiality.

Now, I wasn’t asking for names and addresses, just aggregate numbers. So I’m not sure how that could breach anyone’s confidentiality.

My next step? Well, the UK has a Freedom of Information law, and hospitals are public bodies, so I think my likely way forward is to put in one of these requests when I have some time. That is a pain, though, not to mention that the law gives them a month or two to respond to this request. Most likely they will sit on it until, hopefully, the pandemic is over, when this information is useful now.

I can’t help thinking it is a weird state of affairs. All around the world, people are looking for snippets of information to help them make pretty fundamental stop/go decisions, and our public health services are actively witholding this information.

And relax…

Had a bit of a learning experience this evening. We’d had a bottle of wine on the side for months. I must have brought it in for some occasion, but we didn’t get around to drinking it.

For one, I used to be a wine buff, although I don’t drink much now. For two, we went on our honeymoon to the Corbières region of southern France (if you know your French geography, the Carcasonne area). On our honeymoon, we drank wine from the Chateau Grand Moulin (a moulin is a mill). Okay, in the grand scheme of things, there are more prestigious wines than from the Corbières region, but this wine was delicious. It was a red which my wife actually liked – she didn’t normally drink reds.

We enjoyed the area immensely, and a couple of year later we holidayed again in the region, for a full two weeks. I made a point of seeking out the chateau, met the patron, and we bought a case to bring home. Mixed – reds, whites, rosés. Over the years, we have chipped away at this wine, we’ve holidayed in other areas such as Bourgogne and Bordeaux, so have collected many wines, directly from the producers, over the years. But I must’ve brought a bottle of a 2002 rosé from the Grand Moulin into the house at some point to drink. Which never happened.

I finally got tired of looking at this bottle, so started chilling it a few days ago, and determined to start it, at least, with my evening meal this evening.

I’d never given it any thought before, but how the **** does someone open a bottle of wine, one-handed?

I dug out an old corkscrew:

but no, I could screw it in, but didn’t have a hope of pulling it out again. So, how was I going to have my glass of wine, since currently I am home alone?

After a bit of head scratching, I decided to root through another drawer, and after an exhaustive search, found a different type of corkscrew:

I still can’t operate it one-handed, but a hand and a chin does the job nicely.

Ah…delicious. But, the hoops I must jump through. Still, must be time for another glass…

Cast Off

Disabled is a funny old word. What exactly is disabled? Nuts and bolts? What’s the difference between disabled, and a bad arm, bad leg, depression, etc? Well, one measure is whether you’re in receipt of the relevant benefit, and the UK’s main disability benefit is called PIP, Personal Independence Payment. It’s a form of Newspeak. They cut people’s bus services, then tell them they’re independent. Go figure! But I must not get bogged down. In theory, parliament sets the rules, and they are implemented by the benefits agency, the DWP (Department of Work & Pensions).

At least, that’s the theory. When the DWP makes a decision, people often appeal that decision because they feel it is wrong. Almost 3/4 of these appeals are successful. As far as I can tell, if the DWP were implementing the rules properly, then that figure would be in the region of 0. Okay, it’s never going to be that low. Every case is a judgement call, so you’re bound to get some of them wrong.

And, believe it of not, I do support their aim. With any benefits system, disability, immigration, whatever, you’ve got to have some sort of test. A high jump, where if you jump over the crossbar, you qualify for the benefit, and if you don’t, it’s I’m sorry… Political parties will disagree exactly how high that crossbar should be, but they all agree that thee should be one. Otherwise you’re either giving the benefit to everyone or to no-one.

I was debating with somebody once about whereabouts that crossbar should be. Quite reasonably, she suggested that expert medical opinion should play a part. Quite often, they ignore medical opinion and…did I mention how many people appeal and win through?

But there’s the rub. I have only had one appointment with a doctor in almost four years since the stroke. Even that one appointment, three months after discharge, the main purpose was to tell me that I was on my own, that no further help was available. Further? I was left wondering what help I’d been given in the first place! It left me thinking that if I were a consultant, earning magebucks per year, it might really harm my job satisfaction to have a dozen years of healing experience under my belf, and to be stuck with telling people all the time that I couldn‘t, or rather, did not have the resources to, help them. If it weren’t for the fact that I was earning megabucks.

Of course, I have had contact with the NHS over that time. I take meds every day so need to restock those regularly, for starters. And I’m quite happy to get blood tests – I’ve learned myself what the results mean. And, bear in mind that my wife is a diabetic nurse. But as for visits to the local surgery, I try to keep those to a minimum. For one, I was on meds prescribed by these guys when I had the stroke, so how preventative was that? Okay, be reasonable, it might well have happened anyway. True, it might, but isn’t it suspicious that every one of my meds was changed while I was in hospital? Almost as though I was on the wrong meds to start with! Even since the stroke, I was told by a receptionist there that she wouldn’t help me to get some form printed off – at the time, getting to the surgery was just about my limit, so I was not best pleased that my journey had been fruitless. That particular episode resulted in a complaint, but I doubt I was taken seriously. So when wife asks me if I want to go to their Christmas party, it’s always a curt, No, thanks.

Taking medical advice on board is fine, but a lot of disabled people are cast off by the system, to sink or swim for themselves. They don’t see doctors for long periods – disabilities are generally long-term, so this could be years. And, they likely won’t have seen their hospital doctors since they were discharged.