I’ve been a bit quiet, it’s true.
There’s a really good reason for that.
Back in July I was told that I didn’t have Crohn’s disease, but rather pouchitis. The latter isn’t a whole lot of fun, but it’s preferable to Crohn’s and much more easily treatable. I was so happy at the news that if it weren’t for my crumbling spine, I would have actually jumped for joy. As it was, I sort of yelped, in a good way, and cried a bit with relief.
Three weeks ago I went to St Thomas’ hospital for my third sigmoidoscopy this year. I have had to remove my underwear so frequently recently that I am considering not even bothering to wear clothes in the first place, just a ‘one-size-fits-all-if-you’re-morbidly-obese’ hospital gown under my coat, so I’m ready for action at any given moment.
Anyway, I digress. The very nice consultant came along to peer at the screen. We were both hoping that the course of antibiotics and probiotics I’d been on since July would have cleared up the rotten mess inside my pouch and that the news would be thus: ‘It was pouchitis, let’s keep an eye on it but it’s nothing sinister, you’re free to go and do a little dance as you leave the hospital’.
It didn’t work out like that.
It’s me, remember. Stuff, in general, doesn’t work out like that for me. I never get good news; if I do it’s only because it’s wrong. I’m lured into a false sense of security for the past couple of months and then the words I don’t want to hear come tumbling out of the consultant’s face: ‘It looks like Crohn’s,’ he says, with a sympathetic expression and a pat on my hand, and lo, my whole world comes crashing down AGAIN.
It gets worse, though. Really. He said I’d be brought back into clinic within four weeks to discuss treatment. To me, four weeks was a long time already. I could have done with the following week, but what can you do but smile, say thank you and put your knickers on? I leave in a daze; mum and I go for a nice lunch on the Southbank and we sit in the sunshine and I’m at a loss for words and mum is shell-shocked. We both have a small glass of wine; it’s too small to help absorb the news. I went back on the train to the seaside, mum went back to Kent and we both delivered the news to our respective other halves; my beloved dad and adored husband, both waiting eagerly for news, thinking it would be the good stuff.
And so I went quiet. I didn’t want to talk about it. I couldn’t bear to talk about it. I still can’t. It was the worst news I could have heard; I let out a big sob in the bath the other night but that was it, it stopped as suddenly as it started and I haven’t cried a tear since, other than for a three-legged cat who needs re-homing (I want to take her but Squeaky wouldn’t have it). I always said I couldn’t deal with any more bad news; I’m not going back on that. I can’t deal with it. Then again, I don’t know what not dealing with it means. I’m doing everything on automatic pilot, panicking like hell on the inside, doing all the regular stuff with a smile on the outside. It’s the only way I know, after all.
The thing is, when shit like this happens, you at least want to be taken care of. Instead, I’m fighting St Thomas’ hospital now just as I have fought The Royal Sussex in Brighton for the past 14 years. What am I cross about now? Well, when it got to 15 days post-results and I had still not received a letter with a clinic appointment so that I might discuss treatment with the consultant, I rang the appointments line to see when it might be, imagining that their answer might be: ‘We’ve just this minute sent you a letter, it’s next week.’
Imagine my surprise when they told me that nothing was in the system. No referral had been made from the consultant’s office. Nothing. Isn’t that just incredible? I mean, words really did fail me. I was informed that the next clinic appointment would be in December, three days before Jesus’ birthday. December! I said some stuff and managed not to swear and then called the consultant’s secretary, whose phone line went to an answerphone upon which I was unable to leave a message because the mailbox was full. Really professional, right? I then spent the best part of two whole days ringing different phone numbers, from main reception to the gastro department to endoscopy to the secretary, over and over again. Everything was automated, not a single human answered. At one point the phone was answered and I got excited… but nobody spoke to me. I could hear conversations in the background akin to what it’s like to wake up from surgery a bit early. I was there, but nobody was acknowledging me. This happened EIGHT times. I suppose they just picked the phone up to stop the ringing (so sorry to bother you, my mistake!) and left it on the desk until the caller (me, on several occasions) got fed up hollering ‘HELLO? ANSWER THE PHONE!’ and hung up.
I then emailed the consultant’s secretary. I had her details from the last time I asked a question about an examination which was, of course, answered incorrectly, and almost scuppered my sigmoidoscopy. Three days after sending the email, I had still not received a response, so then I resorted to writing a letter – how ridiculous – to the consultant in which I explained my predicament. I expect he’s busy with eight million patients and three different clinics and won’t see the letter until January, if at all, but I didn’t know what else to do.
I have spent most of today dialing numbers fruitlessly. My stress levels are through the roof; this is not helping keep my inflammation levels down, so my pain is getting worse by the day.
There is something fundamentally wrong with a system which does not allow a patient to speak to a human being; a system which allows for patients requiring urgent care for serious conditions to be forgotten, a system which only serves to cause more stress and upset to patients who are already dealing with dreadful conditions on a daily basis. I can’t be the only patient that this happens to; how is it that there is nobody held accountable for these mistakes, these lapses of concentration whereby a piece of paper doesn’t get to the desk it should get to, whereby someone on the other end of the phone doesn’t answer their phone, and doesn’t allow for a patient to leave a message.
I’ve since emailed the IBD helpline on the advice of a kind chap on Twitter. I had never been given an IBD helpline number in the first place, or I might have tried that. Let’s see if they respond; I live in hope.
I am sick of being sick, there’s no doubt about that, but I’m even more sick of being ignored, being left to fend for myself and wonder if I will ever be seen by the one person who might be able to help me. If I could afford private healthcare, I’d have signed up long ago. All it takes is for one person to make the appointment they’ve been asked to make, to answer a phone, to say, ‘I can help you, hold on’ rather than ‘I can’t do that, you need to speak to the secretary’ and then give me a telephone number which may as well be the number of the local Chinese takeaway; at least I’d get something out of ringing that. Chicken chow-mein and some prawn crackers, maybe.
I’m saddened, I’m appalled and most of all, I’m exhausted. I’m left with no option other than to make the trip from Brighton to London to actually stand in clinic and shout ‘GIVE ME A F*CKING APPOINTMENT NOW!’ until somebody either a) calls the police or b) calls the consultant. What else can I do, short of throwing bricks at the window or driving a lorry through the front door? Actually, the last one is looking more appealing by the minute.
Answers on a postcard, if you will.
UPDATE: Got an appointment tomorrow (Monday), thanks to the person at the other end of the IBD Helpline. I’m taking the lorry back in a minute…