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.

A Walk In The Park

This week, we are firmly in the present.  In this particular present, I am in bed with a very painful gut and problems eating. I have hardly any energy and none of this is helped by the pneumatic drill outside my bedroom window that is redoing the work it messed up when it was last outside my bedroom window just a couple of weeks ago.  I’m having a flare-up and Haringey council is having a fuck-up.  This is not my best day.  Fortunately, my pain will be under control when I take the requisite drugs later on, but that’s probably not the best way to write, so I’m doing this first. Thanks to the NHS, my pain will be relieved; if the flare-up continues for too long, I will go and see my lovely GI Consultant at the hospital. The IBD nurse has already called this morning to make sure I’m ok and that the pain relief is adequate.  I love the NHS and I’m going to resist my usual political rant about this corrupt and morally bankrupt government selling it off in bite sized chunks to the likes of Richard Branson and Cameron’s pals from Eton.  Yes. Resisting that.  Because I’m actually going to vent my – strangely healthy – spleen on a different, though related subject.

I’m going to talk about Atos.  It’s risky, I know, not least because I’m yet to have my DLA reassessment, but that’s also exactly why I need to do it.

I first got ‘awarded’ DLA in 1992 – I don’t remember the date with any clarity, but I know that’s when it was first brought in, combining mobility allowance and attendance allowance, neither of which I’d ever received.  I do remember the day the doctor was sent round to assess whether or not I was eligible.  At this point, I was pretty sick, though also pregnant.  My Crohn’s had been up and down, but my energy and stamina were mostly down.  When the doctor came round, I was in bed.  Husband sat next to me, on the bed, and the doctor sat in an armchair at the foot of said bed which was, to be precise, a futon, so he was actually looking down at me.  At us.  Without having discussed it previously, husband and I found ourselves doing a good cop/bad cop routine.  I was saying things like, ‘Oh, it’s not so bad, I still have a pretty good life,’ after which he would look at me, aghast, and say words to the effect of ‘Are you insane? You can’t even lift a pan of vegetables off the stove.’ 

The thing is, I don’t like that; I don’t like talking about what I can’t do. I never have liked it.  I much prefer to focus on what I can do; that seems to me a healthier and altogether more positive way to live.   But in this climate, with this unelected government, with that bastard Osborne promising this very week to cut benefits by £10 billion (and don’t get me started on Cameron), I have a feeling it’s what I’m going to have to do.  What I should do, if I don’t want to lose my teeny tiny share of what will be left of that benefits pot.  I don’t hold out much hope; we’ve all heard the horror stories of the ESA reassessments. 

Of course, if my reassessment was today – if one of the Atos lackeys was to knock on my door and come in to make sure I’m not conning anybody this afternoon, I might stand a good chance of keeping my benefit. Or rather, getting the new one – the PIP, or Personal Independence Payment. It’s not a reassessment according to the government, of course – it’s a completely new assessment for a new benefit that replaces DLA (Disability Living Allowance) but isn’t the same. Clear? No, me either.  And there’s no chance of them knocking on my door today because Londoners aren’t due to be reassessed, assessed, checked up on or pushed off of DLA/PIP until June of next year. So until then, I’m safe.  Which is kind of annoying, because on days like today it’s all I can do to lift a hardback book.  If I needed to get to the hospital or the doctor’s, I’d have to either drive – which I probably couldn’t, and obviously shouldn’t once I’ve taken my pain relief – or be driven; either way I’d be grateful for my blue badge that means I can usually park near enough to these places to manage the walk in without wanting to lie down on the pavement and cry.  This is one of my very bad days.

But there are other days – more of them since I had the bag then there used to be – days that are amazing.  Days when I can walk to and then around my local park, watching kids play and parents shout at them. When I can touch trees and feel grass between my toes if I take my shoes off.  I’m thinking of summer days, obviously – they’re the ones I like the best. And I had a few of them this summer.  I went with son to Waterlow Park and we walked and marvelled and watched geese on the lake (pond? Is there some kind of body-of-water delineation system? A size thing? It’s probably a pond) and then we sat down on a bench for a while and just people-watched.  I loved those days, but I feel I can’t and mustn’t talk about them. I certainly shouldn’t write about them on a public forum like this. I should keep them a secret, possibly even lie and pretend they didn’t happen, for fear of being seen as that guy with the bad back who works off the books as a window cleaner, shooting up ladders, and then plays a round of golf, all while claiming a massive rate of sickness benefit. You know the guy – the Daily Mail and the Sun are always finding him. He lives down the road from that healthy bloke who has claimed enough benefit to buy a huge house with a pool and a villa in Spain.  No, wait, isn’t that the politician who cheated his expenses – it can get so confusing sometimes…

Anyway, I’m not one of them. I’m not a scrounger or a politician – I’m not actually sure I know the difference between the two, except that one gets pilloried and the other gets a Cabinet position – I’m not one of the mythical 30% cheating on benefits either.  I’m not even one of the 0.5% the DWP itself says is the real figure for people who are genuinely making fraudulent claims. I’m sick.  Chronically ill with an incurable disease (see, just saying that is depressing – it’s not how I like to think of things; it’s certainly not how I like to think of my own life) that acts like most chronic disease in that it varies in severity from one week to the next.

Also, DLA – and the PIP that comes after it – is a benefit for people who work as well as people who don’t.  It’s the only benefit I’ve ever claimed.  I could’ve claimed sickness benefits at many points in the last decade or two – there have been years at a time when I couldn’t work, when I was too sick, when I was having or recovering from surgeries, but it never seemed right. I didn’t ‘need’ the money, in that we wouldn’t have been destitute without it, and for a while there I was still getting sizeable repeat fees from tv shows I’d written; husband had a lot of work, there were people who needed that money a lot more than we did.  Those things have changed now, but I haven’t. I’m sick, but I’m well enough to write as long as I’m not having a flare-up like I am today. Today this post is as much as I can write and I shall probably fall asleep after I’ve typed the last sentence. After I’ve typed the last sentence and taken my morphine.

Ultimately, I refuse to buy in to this Atos-inspired way of thinking.  I won’t accept that I should wallow in my disease and take to my bed for ever more so that they’ll give me a fairly small amount of money every week and allow me to keep my blue badge.  What kind of a society is this that this Coalition is building? A society where those of us who are sick or disabled should be defined by those things?  I will not do it. I’m not going to play.  I’m going to carry on celebrating my good days – I’d shout about them from the rooftops if I didn’t have a fear of heights. And ladders. (Nobody’s going to catch me cleaning windows.)  I will continue to cherish going out and having coffees and lunches with friends; I will carry on getting stupidly excited about using public transport and marvelling at the Oyster card system. I’m still going to get a buzz out of walking to the corner shop just a couple of hundred yards from my house – I say walking, it may look like that from the outside but in my heart it’s still so much of a novelty for me that I feel like I’m flying to the local Londis.  After a couple of decades of not being able to do those things at all, I’m grabbing my right to love doing them with both hands and anybody who thinks I should do otherwise can go join the Tory party. 

Is Atos really going to punish us for doing this? For trying to be well and ‘normal’, instead of sick and crippled and downtrodden? Is this what Cameron’s big society wants from those of us who aren’t completely able-bodied? Because if it is, there’s something far more rotten and insidious going on than anybody is admitting to, and certainly there’s more than enough horrors that we already know about.  Like an inverse Robin Hood, this government is taking from the poorest and weakest and giving to the rich fat cats, and how can that be right? This isn’t meant to be a rant about government, though I suppose that’s an inevitable by-product; it’s meant to be a spleen-vent about the impotence forced upon those of us who just want to work and have that bit extra we need to live on, so that we can.  Those of us who want to be well and functional and a useful part of society.  Most of us, really, when you think about it.

It used to be that when DLA was assessed and reassessed – before I was granted it ‘indefinitely’, as I was some years ago now – they would ask about your worst day.  If that’s still the case, then we might be okay. I might be all right.  I – and thousands of others like me – might actually get PIP.  But somehow, I suspect it’s not going to be that easy. 

I’m going to take my morphine now and think about fluffy wuffy clouds for a bit. Goodnight.

Dr Horrible

A while ago, I wrote a post about a bad nurse I had to contend with while I was in hospital last October.  It got quite a lot of attention, and a few people wanted to know if I’d ever had a bad doctor.  In terms of causing me physical harm, the answer would have to be no, but in other terms … well, there’s this:

For a short while, when my Crohn’s was behaving quite well, I thought that going to a hospital nearer to where I live in north London might be quite a good idea.  It’s not that driving for 45 minutes to west London is a terrible ordeal or anything; it’s not, of course, though parking when you get there, knowing you’re gradually getting later and later for your appointment as you drive around and around the hospital, desperately seeking somewhere to put your car where it has a good chance of not getting either a ticket or towed away, can lead to a mild panic disorder.  And yes, it would be easier in many ways to go by public transport, but in those days I didn’t have a bag and the possibility of my bowels deciding to evacuate without giving me any notice, let alone asking permission, was huge.  The hideous embarrassment of that happening on a tube or bus, in front of an array of disgusted strangers, was a pretty regular subject of nightmares for me, and I wasn’t about to put myself in a position where it might actually happen.  As it was, there were more occasions than I care to relate when I had to dash from my finally parked car into a hospital toilet and change all the clothes I had on below the waist.  I’d fill myself up with codeine before every trip, obviously, but sometimes my bowel wouldn’t care.  It would override all manner of bunging up precautions and just blow – I think it was begging me for an alternative route; trying to force me into agreeing to allowing it to come out through my stomach, to convince me I should have a bag, but I was in no mood to listen to it back then.  Not for years and years, in fact.

Anyway, the brief sojourn at the north London hospital came to an end when they put me through a colonoscopy without any sedation. It was horrible, and I still have the hideous sense memory of a nurse snatching the gas and air mask (the only relief I was offered) from my hand and snapping at me that I’d had quite enough of that.

Soon after, I wrote a nice letter to the surgeon who’d looked after me for years at my original hospital, asking if I could go back and he quickly set me up with a GI Consultant there, who I happily went to see.  The happily bit didn’t last long.

At my first appointment, this new Consultant was fairly brusque; he asked me how I was, I told him, he suggested I have a bag, I declined, he clearly thought I was an idiot.  He didn’t tell me how well I was doing, considering the extent of my disease, as doctors usually did; rather, he sneered at me and told me I had to have a serious think about how ill I was.  I held my own during the appointment, but left shaken and a bit upset, hoping that next time would be different.

There were a couple more appointments in a similar vein, during which time I started writing on a show that meant I had to spend a fair bit of time in Manchester.  I felt quite well enough to do the work, and I was proud of how I was managing the schlep. 

Then came the appointment with the pills.  I hadn’t yet told him about my Manchester trips, sensing he wouldn’t approve.  At this particular appointment, he did his usual lecturing, then pushed a bottle of pills across the desk at me and told me to ‘take these’.  I asked what they were, and he answered – and I swear on everything that matters to me that this is true – ‘they’ll make you better.’  I told him that if there was a pill that could do that, I rather thought I’d have been offered it before that moment. He asked me if I was going to take them or not, and I said not if he wasn’t going to tell me what they were, what they’d do, and why I’d never had them before.  He didn’t seem keen on doing any of that, so I looked at the label and saw they were Metronidazole – an antibiotic that has been known to help Crohn’s sufferers in some cases.  I’d tried it before and it had made me throw up.  I always felt constant diarrhoea was quite enough without throwing vomit into the mix, and anyway, they hadn’t done anything positive alongside the puking they caused, so there was no way I was going to take them again.  He told me I had quite an arrogant attitude (with no sense of irony) and I left.  This time I was shaking with fury and impotence.  I called husband and told him what had happened, then cried all over the steering wheel, eventually pulling myself together enough to make the drive home.

You’d think I’d have stopped seeing him after that, but I didn’t.  I don’t like to admit defeat; I determined that I would charm him on our next meeting, and make him see that I’m an intelligent person, well used to managing my own disease, and happy to work with any doctor.  I wouldn’t mention that all the GI docs I’d seen in the past had been quite open about the fact that they didn’t know enough about Crohn’s to make any definitive statements; that they liked to listen to the patient’s experience and work with us to find relief.  I’d dazzle him with how marvellous a patient I could be.  That was my plan.

I walked into his office and sat down.  I told him how well I was doing; that I was regularly taking the train to and from Manchester, going to day long meetings and getting scripts written.  How I was balancing it all out with full days of rest every time I came back to London, and sat back awaiting his warm response to my honesty and pride in how I was coping.  Ok, I didn’t expect a warm response from this cold fish of a man, but I did expect some respect; some acknowledgement of my attempt to live a relatively normal life despite having such a chronic condition.  I didn’t get any of that.  Instead, he told me I was ridiculous. ‘You’re a very sick young woman’, he said, ‘Why are you pretending not to be? I don’t think you can be doing all this travelling to and from the north like you say you are.’ Apart from taking a brief millisecond to recognise that it was nice to be called ‘young’ when I was in my 30s, I was gobsmacked. I didn’t answer. I just stared at him, which he took as his cue to continue berating me for … well, I’m not sure for what.  For not taking to my bed and lying there with a hand on my forehead whimpering for the rest of my days, perhaps.  For not bowing and scraping to him whenever I saw him, maybe. I had no real idea, but I left soon after for what I swore to myself would be the last time.  Back in the car I kicked the doors, shouted in fury, not caring what I must look like to anyone passing by, and finally threw myself across the passenger seat, sobbing.  I couldn’t and wouldn’t go and see that man again.  I’d rather not see anyone, ever.

Back at home, I composed a very long letter to my aforementioned surgeon describing in detail how this doctor had treated me, stating that out of respect and gratitude to him for saving my life so many times, I was writing to him rather than complaining directly to the hospital, and asking what he thought I should do next.  If he could perhaps arrange for me to see a different consultant, or if I should in fact write to the hospital.  He wrote back a very apologetic and flattering letter, enclosing an appointment with a new GI Consultant for two weeks later.

I went to that appointment with not a little trepidation.  I’d never feared meeting a new doctor before; I like meeting new people, hearing new thoughts, and until that last unpleasant experience, I’d never met a doctor I hadn’t got on well with.  But that last guy had me shaken and unsure and so I was a bit of a wimp of a person when I walked into the new Consultant’s office.  He stood up to say hello, took my hand, and smiled warmly.  I glanced at his desk – the letter I’d written to my surgeon was sitting there in all its glory; with all my furious and disgusted comments about a man who must surely be his colleague.  I was mortified.  I had to say something.  ‘I didn’t realise you’d be seeing that.’ I said, quietly.  He laughed.  ‘It’s fine,’ he assured me. ‘What’s not fine is the four volumes of notes you’ve got..’ He indicated the teetering pile. ‘Can you give me a brief rundown of what’s happened so far?’  I sat down, feeling comfortable; I liked this guy already.  I told him how many surgeries I’d had, pointing out that he might have to check with my surgeon to make sure I hadn’t missed any – there were a few years that were a bit of a blur.  ‘I had my last op in 1990,’ I told him, fairly sure I was right about that, ‘Then, against all the odds and quite a bit of advice, I had a healthy son in 1992,’ I paused, feeling quite proud of myself as I realised the enormity of that statement and he smiled back.  ‘Name?’ he asked.  I was confused; he’d forgotten my name?  Really?  He could see I was struggling, ‘Your son’s name..’ he said.  And I felt a warm glow.  Instead of a Consultant who thought I was some kind of stupid fantasist, I was now sitting with one who cared about what I’d named my child. 

As I left his office feeling relieved, happy, slightly adoring, I said, ‘Thank you so much; you’re way better than ..’  and I named the other – evil – Consultant.  He laughed as he shushed me, saying, ‘He’s in the next room.’ I didn’t care.

11 years later, I still see this lovely Consultant and sometimes, when I’m sitting in the waiting room, I watch people go in to see the evil Consultant and marvel when they don’t come out of his office in tears.  I suppose they’re behaving unwell and self-pityingly and therefore pleasing him.  I like it my way better.