29 March 2012

Priorities

First they came for the disableds,
and I didn't speak out because I wasn't disabled.

Then they came for the NHS,
and I didn't speak out because I wasn't sick.

Then they came for the grannies,
and I didn't speak out because I wasn't old.

Then they came for my pasties,
and suddenly I gave a crap.

18 March 2012

♫...Health minister, I mean sinister...♫ #SaveOurNHS

Last week was a pretty ordinary week for me. On Monday morning I got up and went to see my GP so he could refer me to yet another specialist because yet another part of my body has gone wrong. From there I went to my local pharmacy for the second time in 2 working days. I go in there and everyone exclaims "hi Lisa!" I'm pretty sure it's not the kind of establishment the Cheers theme song writers had in mind.

On Wednesday I had a an appointment at a specialist hospital. The clinic in question I was attending that morning is totally unique, there is only that one in the whole country.

I got all this care on the NHS. Without question I wouldn't still be kicking around were it not for the care our health service provides.

Because I depend on the NHS so much, last week I also felt the need to go to a couple of "save our NHS" thingies. Unfortunately with so many of the services I depend on being under threat, going protesting is part of a fairly normal week now too. Rather ironically I couldn't go to the "hands around St Thomas'" vigil because I was sitting in a different hospital having medical implements shoved up my nose.

I've been one of the NHS's most loyal customers most of my life. Growing up with brittle bones I spent so much of my childhood waiting for x-rays that I could spell "danger" and "radiation" from reading the signs on the door at about the same age that most of my peers were getting to grips with "cat" and "dog". During my teens and early 20s I used the NHS much less, though still a bit more than Joe Average. From my mid-twenties onwards my life has been this thrill-o-rama of hospital appointments and increasingly long prescriptions: Some of my current health problems are related to my osteogenesis and some are not. Then there's those that are not really osteogenesis-related, but OI exacerbates them. I'm basically falling apart.

I know of people who are in favour of these reforms who've been mystified by the fact that I'm opposed to the bill but acknowledge stuff like this. It's quite simple really: I think that when you care passionately for something it's important to critically assess its failings as well as its achievements. Acknowledging that something could be better doesn't mean you want to see it dismantled.

I care passionately about my car. Because of my impaired mobility I need it for most excursions out of my flat. Acknowledging that the heating doesn't work properly and that I wish the heating worked better doesn't mean I want my car to be shoved in a crusher.

I care passionately about the NHS too. I need it to stay alive. Acknowledging that it often fails groups of people doesn't mean I want the NHS dismantled. I want to see the problems fixed, just like I wish Peugeot would fix my car's heating so it doesn't get progressively cooler the faster my car is going.

The thing is: The NHS can't fix their problems until they know that they exist, and where they exist. Just like Peugeot can't fix my car until they find where the fault actually is. Not being a petrol head I can't run diagnostics on my car to find the cause of the problem, but I can help the NHS find problems by writing a complaint when I encounter a useless doctor. Evidence like the aforementioned stuff on elderly care, or Mencap's work on people with learning difficulties getting failed by the NHS all help the NHS to identify faults so they can be fixed. Suing over clinical errors was a way of not only getting compensation for injuries incurred, but it was yet another way of providing feedback over where faults lie. The Legal Aid Bill puts that in jeopardy.

And quite simply there's the fact that the Health and Social Care Bill does nothing to improve the care received by the demographics currently failed by the NHS. If anything you can bet that such patients will receive even worse care under a more competitive system.

Another one of the NHS's big issues is waiting lists. Last week my GP referred me to maxillofacial because I need to see someone about my right temporomandibular joint. I need to see someone about it now, not in four months time. At this precise moment my jaw is hurting so much that the pain travels right the way around to the base of my skull. Not only do these reforms fail to address the issue of waiting lists, if anything they'll make matters worse.

When Lansley and co get on the defensive about the reforms they point out that Labour started the process of outsourcing to private providers. (Which is true, but it doesn't mean they have to keep up the practice.) Because it's been happening for a few years I've had a couple of experiences and know first-hand that it increases, rather than decreases, wait times.

Three years ago an orthopaedic surgeon sent me to have my knackered ankle MRIed. I was given an appointment to have it done six weeks later. Two weeks before the appointment I got a letter telling me that my appointment had been cancelled and instead I was going to be having my MRI at a private hospital because they were using private providers to cut down their waiting lists. So did this mean that I had my MRI sooner than the two further weeks I had left to wait? Of course not. Want to know how long I did wait? 10 months. By the time my ankle was finally MRIed it was a year since the consultant ordered it.

Once upon a time orthotists actually made orthotics. As a child I had countless splints made while I waited. Now all orthotists do is take a mould of the body part to be supported and send the mould to a private provider to make the product. The same orthopod that ordered the MRI also ordered orthoses to be made for my shoes. The ones I'm waiting for now have been sent back to the factory three times since they were first made, because the private company can't follow simple instructions. It's been about two years since I went back to the orthotist because the first pair had worn out, so can someone please explain to me how a two-year wait can possibly be justified when they could actually be made on the spot?

I'm really not sure I can face the prospect of waiting a year or two to get my jaw seen to.

Outsourcing to private providers doesn't just result in excessive delays and headaches from where you kept head-butting the wall in frustration; the consequences can be far graver.

The government want GPs to handle budgets taking that responsibility out of the hands of the PCT's. When my GP makes judgements about whether or not I need to see a maxillofacial consultant I want him to make that decision based on clinical need, not budgetary concerns. (Additionally there's the fact that GPs are so untrustworthy according to the government that they can't be allowed to make judgements on someone's fitness for work: That's the government's defence for why they "need" to use Atos). I'd rather my doctor spend his time doctoring, leaving the accountants at the PCT's to do the accounting. If GPs don't want to spend their time dealing with budgets they're going to need to employ the bureaucrats who've just had a severance package from their PCT which is a waste of taxpayers money. And if there's one thing this government like to bang on about: It's taxpayers getting value for their money.

But the big, big, BIG problem with these reforms is around the role of the Secretary of State. Initially the bill removed the obligation on the Secretary of State to provide a National Health Service. This would have been the end of the National Health Service that is accessible to all regardless of ability to pay. Thousands of amendments later the bill now only greatly reduces that obligation, rather than removing it entirely. But it's still likely to see people like me with many health problems, and no money, getting absolutely shafted once the obligation to provide an NHS has been cut back.

The government keep insisting that the reforms aren't about "privatising" the NHS. Yet we keep hearing about more and more services getting outsourced: And the bill hasn't even passed yet! Though ever increasing outsourcing isn't really surprising when you look at the list of politicians with ties to private healthcare companies. This is all despite the fact that patient care is worse under private providers (I refer you back to my own 2 experiences of outsourced "care") and our current system is more cost-effective. It's worth noting that that last linked article is not only from The Torygraph, but the writer freely admits that he has no ideological opposition to breaking up the NHS if a cheaper way of providing care could be found.

Nye Bevan famously said "the NHS will last as long as there are folks left with the faith the fight for it." I'm deeply worried that most people in Britain have become so apathetic and/or cruel (they let the horrific Welfare Reform Bill pass…) that there are no longer enough people with enough faith to keep this world leading, value-for-money, health service alive.

What can you do? There are 2 petitions to get the bill delayed until the government have published the risk register. One is from Avaaz, the other from 38 Degrees. You could also come to Parliament Square this afternoon, but you might want to be aware that yesterday's demo was just a tad over-policed.

♫ = Andrew Lansley Rap

08 March 2012

♫...I'm sitting down here, But hey you can't see me...♫

I don't often do angry. I'm quite lazy and anger is a very energy-intensive emotion. But International Women's Day today is making me really fucking angry. Why? Because I've been erased from it. Or that's what it feels like.

I've read so many posts talking about how women are hardest hit by the current government cuts. Which isn't entirely true. It's something I've ranted about a bit before. Yes, non-disabled women are more affected by cuts than non-disabled men. But then disabled men are harder hit than non-disabled women, leaving disabled women right at the bottom of the shit heap. No-one is talking about this despite the fact that around 18% of the population have some kind of impairment. Roughly one in 5 women are being blanked by today's discussions.

I read a piece about how feminism doesn't represent working class women because all feminists are intelligent and articulate and working class women aren't. So does that mean I'm not intelligent or that I'm not working class? Which part of me must be erased so I fit neatly into what I'm supposed to be? My only pretension to being middle class is that I occasionally eat houmous.

My class and my intelligence are both affected by my impairments. I've always had impaired mobility but until I was 26 I was perfectly healthy; I just had a crappy skeleton. Had I not become chronically ill I'd probably have socially mobilised my way into middle classedness by now. Instead I live on benefits, in a council flat, and buy my clothes in supermarkets because that's all I can afford. And people with OI are usually above average IQ. Though AFAIK it's not known if that's a quirk of genetics or just because we spend our childhoods so bored at spending so much time waiting for x-rays that we can spell "danger" and "radiation" from repeatedly reading the sign on the door at about the same age our peers are getting to grips with "cat".

I also read a piece about how offensive it is to women that the language of mental illness is quite women-centric. "Lunatic" has connotations of the menstrual cycle, while "hysterical" pertains to the uterus (think hysterectomy). As a woman with depression I'm pissed off that women without mental health problems are supposed to be offended at being compared to me.

There are calls for women to rise up and challenge the patriarchy. Would the revolution be accessible to me? I doubt it considering I'm not even allowed to be part of the debate.

You might also like... 'Caitlin Moran and feminism’s ableism problem' on The F Word