Thursday, 25 October 2012

The Patient Is Exempt

I’m now well into week 2 of this flare-up and I can’t say I’m enjoying it terribly much.  It hurts when I eat, it hurts when I don’t, and I feel sick half the time.  The morphine makes me feel sicker, no matter how many anti-nausea meds I take, so I’m eking out that tiny stash of Pethidine I had left and hoping the doctors might change their minds and give me some more one of these days.  So, that’s where I am. Basically, a long drawn out and frustrated ‘Oooooowwwww’ covers it. Should’ve just gone with that. (I’m way too verbose to go with that.)

After my last blog got an unprecedented number of hits, thanks largely to the Guardian kindly linking to it, I was a bit thrown. I felt like I had some kind of responsibility to continue to report ‘weighty’ stuff like my take on the Atos scandal; I was worried that my little blog about poo had outgrown itself and wanted to be something else; something important.  Like I should start researching things and making profound political points every time I post.  And then I remembered that nobody’s paying me to write this; and while being paid for writing is always nice, not being paid means you should be able to write what you want.  So, whilst I will probably stay angry with the likes of Cameron, Osborne and Hunt (oh my) for as long as they - and I - are alive, I’m also gonna stick with my original mission and talk about living with a bag and what it’s like and why I love it, and why I’m grateful for it, and when that naturally leads to fury about this hideous, heartless, unelected coalition, then that’s what I’ll write about.  But it doesn’t always.  Sometimes it’s just about the minutiae of life with a bag. Sometimes it’s just about the poo.

But not this week.  Because I didn’t see that Atos stuff coming; I really didn’t.  When I was awarded my DLA ‘indefinitely’ some years, ago, I took it as read that I wouldn’t need to worry about it again. That of all the things that concerned me, my fortysomething quid a week from the government, and the blue disabled badge that went with it, were two things that were guaranteed.  That they were as dependable as the Crohn’s itself in that they would be with me always.

Of course I didn’t vote for Cameron – very few people did – but neither did I imagine, when he took the reins that nobody had given him, that his over-privileged background and commitment to the bank balances of his equally privileged pals would make for such a cruel regime.  It really didn’t occur to me that his government would attack the weakest, sickest and poorest  as though – in a creepy parallel with the odious Mitt Romney – they didn’t matter, because they – we – were unlikely to vote for him. 

I was a fool.  Like so many of us.  And I don’t want to be a fool again, so I’ve found myself, as I’ve been gripping my stomach and trying not to wail, thinking that we need to be ahead of the game.  We need to predict what he’s going to hit next – the NHS is being destroyed already, benefits are being slashed by people who wouldn’t know the difference between a blister and a blastoma, and whatever comes next should not be any surprise.  But I would like to know what it will be.  How he next plans to wipe us out of existence, ignoring the masses who march and sign petitions and shout and scream for some kind of justice, as he closes his soundproof door and takes a look at Sam Cam’s newest range of eight hundred pound notebooks.  (Yes, really – look!)

Having been caught unawares by the Atos horrors, and specifically how it would affect me and my fellow chronic diseasers, I find myself looking around in the paranoid fashion of a teenage girl at a 70s DJ reunion, for the next coalition target.  The next area they can hit and simultaneously screw us over and claw back a few billion quid.

I think I can safely assume that neither Dave nor any of his pals read this little blog of mine, but if you do see him, please keep the following theory to yourself. Though to be fair, if I’ve worked it out, I expect someone far more callous than I will have done, too.  And here it is: you know that several billion they’re looking for so they don’t have to get the bankers to pay for their own mistakes? I give you free prescriptions.  Or rather, I imagine they will take away free prescriptions.  And not just in Scotland (if they stay in charge there), and Wales, where everyone is entitled to them, but here in England too, where far less of us get that privilege.

For years, I didn’t qualify for free prescriptions; the list of chronic diseases that do qualify is fairly arbitrary and IBD organisations have been campaigning for bowel diseases to be on that list for at least 25 years, to no avail.  Cancer only got on the list in 2009 – it’s a pretty exclusive list.  Crohn’s and Ulcerative Colitis still aren’t on it, but luckily for me permanent stomas are.  So, phew!  Thank goodness my disease was so bad that they needed to hack out my entire colon, bits of my ileum and a small piece of my stomach, resulting in my needing a bit of intestine being brought out of its natural habitat inside my body, so that I could poo through it into a bag.  Lucky, lucky me.  But then I thought that when I got DLA too – this time I’m not going to be so confident; so sure; so relieved to have a huge expense mitigated.

Free prescriptions obviously go to children, pregnant women, people on certain benefits, and the elderly, but those aren’t the ones that cost the money.  I can’t find an exact figure (I told you, research really isn’t my thing), but I did learn that a) despite the limitations of that list, 88% of prescriptions dispensed are free and b) the NHS paid more than £9billion in prescription costs last year.  That’s quite a lot of money. I’m sure Dave would like that back, and I’m pretty convinced his lap dog Jeremy would be delighted to present him with a way of getting it.

But if you were to read that somewhere - that free prescriptions for the chronically ill are being dropped - if you’re not getting them yourself, you may not realise exactly what that means; how it would impact sick people.  Let me give you a clue.

I can’t speak for anyone except myself here, so I’ll tell you my rough costs – a box of 30 bags costs £90.  Allowing for user error –that would be my own stupidity; lack of attention for whatever reason - and the occasional faulty batch, let’s conservatively say I go through one box every 6 weeks.  That’s (gets out mobile phone, tries to find calculator app) about £780 a year.  Then there’s all the stuff that goes with it – removal spray, barrier spray, seals, powders, pastes and creams add up to roughly £40 each time you purchase them, and that’s all before you hit complications and require special underwear, belts, support garments and stoma protectors.
Then of course, there’s the medications. Which probably cost way less than the £7.65 per prescription that I would be charged if I didn’t get them free, but because they’re not available over the counter, that’s what has to be paid.  All in all, I probably save well over a thousand pounds a year, which is a fair old sum.  And there are people who save a lot more. People who need oxygen tanks and line feeding and injections (I was on injections before I had the bag that cost £357.50 a shot. I had to give myself one shot a week – see Dave, I’m saving you money! Lots of Crohn’s patients still need that injection.) and infusions and so many other things that I know nothing of. All adding up to that £9 billion plus that could be snatched back.

See?  It’s a good idea isn’t it? If you come from a world where money doesn’t matter and you’ll never be short of it whatever you spend – like Dave and his friends do – it seems an obvious solution.  I’m not telling him though, and I’d appreciate it if you didn’t, either.

Short of making the bankers pay for what they did to our economy, and if the benefits cuts don’t make up for the ridiculous resultant national deficit – which they won’t; no matter how many people end up destitute – this free prescription thing seems a sensible way for a heartless, ignorant, greedy government like ours to go.  Not good for the nation, but then that’s quite clearly not an issue for them.  Obviously, they’ll also have to cut the prescription prepayment certificate (PPC) option as well; where you pay a nominal sum – not that just over a hundred quid is exactly ‘nominal’ to people already struggling without their benefits – and all your prescriptions are covered. That’ll have to go. 

It’s also clever, because a lot of people wouldn’t be able to afford the actual cost of their drugs and medical supplies – my husband works, we’re doing ok, but we’d find it tough – and would then either slip through the cracks or worse, and end up not voting at all, which would be great for the tories.  It’s win win for them.  Lose lose for the rest of us.

There is another option, obviously – a bit of work on shutting those tax loopholes that make it easy for all Dave’s fat cat mates to avoid paying the billions of pounds in taxes that would more than cover the cost of these ‘essential’ cuts.  That’d do it.  That’d put us happily back into the black and we could still subsidise the disabled, sick and poor.  But that’s not the tory way. 

Well, that’s my anger for the week purged.  It’s exhausting though, and I do have a few Pethidine pills left, ready to take me away from the physical pain. Off to the world of unicorns and fairies and a decent, caring government.  Opioids are grand – I think I’d even be happy to pay for them.  But don’t tell Dave.


  1. I have a PPC and yes, I save money on it; quite a lot of money. Not as much as you, but then I am not as ill as you.

    It has been suggested (by a government stooge?) that if we wish to receive the pensions we have all been paying into, then the evil pensioners should donate time to helping others; otherwise their pensions should be cut. No matter that the pensioner may be ill, or tired after their long working life. Of course that will not happen to stooge's occupational pension. But that does not matter as he is clearly a Patrician, instead of one of us Plebs. Another jolly wheeze for Dave Cam and little GO to save money at the expense of the 'lower classes'

  2. I'm fortunate that here in Wales all prescriptions are free, if not I'd be spending a lot every month.. which would definitely add up over a year.
    Makes me so sad and angry to see what is being done to the NHS and the benefits system, but it's a useless kind of anger.. as I have no ideas on how to stop it.

  3. You're such a fantastic inspiration to us all. Despite your horrible flare-up you still manage to make me laugh and cry in equal measures, and urge me to get out of my comfy chair and scream at the Tories for what they are doing. Wonderful blog - sending you much love and healing energy.Richard xx

  4. Hi,

    I have a quick question about your blog, would you mind emailing me when you get a chance?