Friday 12 April 2013

I love the welfare state

kaberettPosted by kaberett

[Content notes: medical gatekeeping, current government policy, graphic medical details, cancer]

... I think the NHS is great
Forget about your worries and your strife:
We’ve got our - healthcare guaranteed
They will not charge us any fees
The welfare state’ll care for us for life!

And, do you know, I really do love the NHS. I really do love the welfare state. I love receiving DLA; I love my bus pass; I love my wheelchair. (Yes, my wheelchair? Is the NHS' fault.) I love all of the various ways in which the welfare state makes it easier to Exist While Me in our society; I am endlessly grateful that I can leave the house, that I have support to Get Stuff Done, and so on. I have wept grateful tears over being able to call NHS Direct and be told whether or not to go to hospital. I love being able to attend my GP once every couple of weeks in order to catch up on all the things that have gone wrong, tweak my doses, and so on. I love that my prescription medications - I'm on somewhere around 10 a day, ignoring my as-and-whens - only cost me one hundred pounds a year.

When they're ill in the US, their budget's blown,
Bankrupt by doctor's bills, not like at home
GPs and hospitals for free

For every slightest malady.
When you've fallen into the rocks and plants,
Or your kid's put ants into your pants,
Or maybe - tried a few...
The NHS is always there to care for you.

For nearly a year in there, I thought I was going to be moving to South California for grad school. Specifically, I thought I was going to be moving to LA - a country where one of my standard medications isn't FDA-approved, and a city that makes my lungs hate me for a good three months after I move somewhere with better air quality.

Even with the (extremely comprehensive) health insurance provided by my grad school, I'd have been paying minimum $100/term for the insurance, plus another one hundred bucks a month as co-pays on my prescriptions, as near as I can tell - if I'd even been able to persuade doctors to prescribe me long-term pain medication. (Put it this way: it would probably have been easier to get hold of medical marijuana than of codeine, even though I've a history of using codeine responsibly, and am by now fully aware of what dose I need and what side-effects I'll get.)

And that? Well, that's before we get onto the topic of my major medical condition (average delay in diagnosis from first symptoms in the US are even longer than the 8 years you get in the UK) - and, of course, the fact I'm trans*. In the UK, I can in theory - eventually - get hormones and top surgery. For free. [Content note: cissexism, gatekeeping, general appalling bigotry.] That is so, so far from being true in the US - where, as in the UK, most insurance plans don't cover trans*-related healthcare, but unlike the UK going private is your best bet - that it's really nowhere near funny.

You know we love the welfare state
We think the NHS is great
Forget about your worries and your strife:
And if you're - not too hard to please
We generally won't charge you fees
The welfare state'll care for us for life!

That's my long-term care. Urgent care? Yep, I'll take the NHS again, please. I mentioned NHS Direct above - but that is not all (said the Cat in the Hat). Over the course of my undergraduate career, I've landed in Accident & Emergency at least four times, that I can easily remember. Twice for pain so bad I was immobile to the point of barely being able to breathe, triggered by rolling over in bed; once for being so exhausted that - after a four-hour nap, mark you - I barely managed to get halfway through the box of takeaway a friend had brought me before collapsing face-down on the table again; and once for symptoms consistent with ovarian torsion and necrosis. (Respectively: periods are a nightmare if you're me, with endometriosis and a Mirena; it turns out I get fatigue-related side-effects of COX-II inhibitors badly, and it's not a good plan to combine them with (a) normal period-related fatigue and (b) the beginnings of something viral; and finally, a  burst ovarian cyst. NHS Direct were really firm about me getting properly examined, though.)

We brought in Virgin to run your GP,
Maybe next'll be surgeons, or A&E.
And we'll just leave the NHS
To deal with funding all the rest
Like chronic cases that cost a packet
And when we find they just can't hack it 
-- they'll privatise them too! --
Just call it NHS and claim it's nothing new!


 Somewhere in the vicinity of a year ago - maybe longer - I found myself humming the tune to Bare Necessities. Hold on, I thought, isn't this the nastiest little ode to privilege and capitalism I ever did hear? And, er, yes, it really is. (Actually? It really isn't. But it did win the prize for that five minutes.)

And then I realised that "I love the welfare state/I think the NHS is great/forget about your worries and your strife..." scanned, very loosely. (Very loosely. It takes being a little creative with the metre.)

I wandered around humming this for far longer than was really sensible - I do mean months, here - and eventually Patch mentioned an interest in joining Lashings. We started messing about with Lyrics together. One of his first big writing/rehearsal weekends, he took along what we'd got so far - it was by no means a finished product - and the collective LashBrain polished it up into the beauty you see right here. (Over the course of several more rehearsals, the collective LashBrain put together awesome choreography, too.)

So there we have it: the creative process.


You know we love the welfare state
We think the NHS is great
Forget about your worries and your strife
We've got the - bare necessities
They won't charge you excessive fees
The welfare state'll care for you for life!

My mother was diagnosed with ovarian cancer in late 2008. Her work provides health insurance: at the point at which it became clear that the NHS was going to spend weeks to months fitting in a diagnostic biopsy, she went private.

The five-year survival rate for ovarian cancer is 44%.

We were lucky: my mother had health insurance, so had the option of speeding things up.

We were lucky: my maternal grandmother had also had ovarian cancer. My mother knew the symptoms, and she is highly-educated, very middle-class, and very willing to kick up a fuss.

We were lucky: it's a rare hereditary form of ovarian cancer that has - relatively speaking - incredibly high survival rates. (How high? I don't know: of the 120-odd ovarian cancer families in the catchment area of our enormous teaching hospital, we're one of five with this particular gene. Stats aren't great.)

We were lucky: when my mother was diagnosed, she was at stage II; the cancer was surgically removed before Christmas - a turnaround of less than four weeks from diagnosis; she started chemo early in the new year. We had health insurance. Thank the gods (four years on, I am crying as I type this) that she had health insurance, and she is going to be okay.

It was the NHS, though, who tested her - who tested my grandmother - and who tested me, and my aunt and uncle and cousins; it is the NHS who will continue to test us, as we come of age - and who established the responsible genetic marker; who took my blood and told me I'm not a carrier. That this, at least, I do not have to worry about.

It's the NHS and research hospitals that gave me that assurance. It's the NHS and research hospitals who told us that my mother's chances of surviving past the five-year mark were much, much better than the 30% we'd been led to expect based on her type of tumour. Private healthcare said: nah, this kind of ovarian cancer isn't hereditary; you're kinda fucked, mate.

The NHS bundled me up close and gave me hot chocolate and asked if I was sure I wanted to be tested yet. The NHS watched me hold my mother's hand and stick out my chin and said I wanted to be screened. The NHS told me, with reams of comforting statistics, that whatever happened I was going to be okay and they would make it so.

With our new free market in patient care
You get to be picky - the choice is there!
But unless you have got the means
The choice is go to Milton Keynes
But if you need help and you've been denied it
No big de-al - just go private
-- have they given you a clue? --
Private healthcare's always here to care for you!

Sadly, the general truth of my experiences with the NHS is this: it's fantastic if you're going to die unless they do something right now, but as soon as the timescale dilates beyond days or weeks - as soon as you enter the realms of the chronic condition - assistance is thin on the ground.

The average diagnostic delay in the UK is 8 years; the average age at menarche is 13: I've written about this before. With private health insurance, and with all the privilege I receive as a university-educated white middle-class wealthy person, it took me six years to get a diagnosis: six years of thinking I was making it up, or it didn't really hurt, or everyone put up with this, or it was going to keep getting worse and no-one would - could - do anything to fix it... or all of them, all at once.

Private healthcare reached out a hand, and pulled me out - for a price.

And from there, the NHS took over.

You know we loved the welfare state,
We thought the NHS was great,
We forgot about your worries and your strife:
Forget the - bare necessities,
Your healthcare's now a luxury.
The welfare state has reached its end of life.

Way back when it was founded, Nye Bevan said:
The NHS will survive as long as there are folk left with the faith to fight for it.

... and here we are, and here it is.

Mostly, I try not to think about what's happening to Claire Rayner's beloved NHS, because I freeze. I don't know how to respond, except with panic.

But: here we are, in it together, us and the NHS.

Let's do what we can.


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