I go to freak clinic every six months. Ehlers Danlos falls within the remit of rheumatology but there are only two centres in the whole of the UK where they specialise in us bendy bod's with one or two other consultants floating around who specialise in EDS because of an interest in genetics or even dermatology. For an accurate diagnosis people have to go to either Leeds or London, where they are in favour of the day to day management being done locally which sadly all too often causes major problems with all sorts of things from primary care trust funding to the ego of the local rheumatologist.
I do have a local rheumatologist, who on the one occasion I met him seemed quite nice but has the most horrendous work load and as Dr Grumble has just described so well, those pesky government targets only apply to new patients not those of us who need to be seen on a regular basis. No target to be met means waiting lists that can be endless. Situation summed up by this exchange yesterday
Dr FC : "Are you still seeing Dr X"
Bendy Girl : " who's Dr X? Oh no, I don't think so, but maybe in time, is that my rheumatologist, ooh I met him once?"
So instead, I have freak clinic. A consultant who wears all sorts of hats. Maybe years ago he would've been called a general physician, but these days he has to be called all sorts of other fancy things instead, though admittedly freak doctor is probably not top of his CV.
Instead of seeing this as a bad thing like so many I know do, as not being able to see a rheumatologist locally, I see freak clinic as a good thing. Dr FC was the first consultant I saw after I was diagnosed. I was scared and scarred from so many previous negative interactions with doctors. He treated me with the respect and dignity I'd never known before from a doctor. He was willing to help me when no-one else would. He was willing to learn about a condition he'd never come across before, and had only a vague idea about from text books. Once he started learning about that condition through my body he was willing as he put it "to throw everything he'd learnt in medical school out of the window when I came into the room". The most amazing thing about Dr FC is that he believes whatever my body presents to him. However bizarre that may seem. Understands that it might be pretty difficult for non-bendy people to say dislocate a rib by sneezing, but throw that collagen defect that causes EDS into the mix and anything's possible.
So yesterday was a big day at freak clinic. Smiles all round. When Dr FC started to see me just after I was diagnosed I was sporting the dangerously skeletal look, with slurred speech and a drooped face for good measure. Unable to support myself. (on my feet, not financially!) Now I'm at a healthy weight. With very noticeable boobs. Not a hint of slurred speech and only a droopy eye when I'm so tired I shouldn't be awake anyway. Walking well for someone on dislocating hips.
On the way in the lovely nurse who always tells me how glamorous I look even when I looked like Nicole Ritchie on a fat day told me I looked glamorous and voluptuous. Dr FC just wanted to know how I'd done it. I said it was as simple as it was impossibly difficult. I had a choice. I could either get really fat and end up in a wheelchair full time just getting more ill and more fat, or I could do what I'd done. Dr FC tried to control his laughter. The nurse in the corner didn't bother. Dr FC wanted to know how I'd done it though, and as everyone in the room was laughing so much by that point all I could really say was that I'd done it because I'd seen it as having no choice, the alternative was so unacceptable to me.
How was that I started by sitting on a wobble cushion for just 30 seconds a day, at first that was all I could manage. I built it up really slowly. After all, it wasn't like I had anything better to do. That was the bit that made it sound simple. It wasn't. Every second was a fight against excruciating pain and a body that wanted to do anything but what I wanted it to do. No physiotherapy. No occupational therapy. No pain clinic, they wouldn't take me on when I was at my worst, and when they would I was managing so well they got in a strop, not being keen on patients who've already done everything they would suggest and more. Dr FC knows that. He was there through all this. Just him, my GP, and me. With the true EDS specialist at the end of a phone if we needed him and a 10 minute appointment once a year. They've had their funding cut too. Being rheumatologists. Besides, there's plenty more people out there needing to be diagnosed.
Thing is, I might have done all this myself, but I'm pretty sure I couldn't have done it without the support I've had from Dr FC and my GP, and I know they've been scared. They did their best to hide that fear from me, but I always knew. It's got to be frightening being the person in overall charge of a patient with a condition you know nothing about, unable to get that patient any of the help they need, while those who control that help the social workers, the occupational therapists, at times the physiotherapists turn their backs on you and ignore the situation.
So I suppose that makes it even more gratifying when, despite everything that person gets so much better. Yes, I should have had access to rheumatology locally, at minimum every six months. I still should have that, but I realise that I can't see my rheumatologist because he's too busy trying to meet government imposed targets that tell him to see all new patients like yesterday while the fuckwits in the Dept of Health fail to realise these new patients are mainly grossly overweight and moaning that their back/knees hurt, instead of those of us who actually have complex conditions that need medical management rather than someone to say 'no shit. lose half your bodyweight then you might find your knees hurt less'. I can do that without going to medical school or needing a six figure salary, but then the department of health never like to include real patients in their stupid surveys.
I made the best of things with the help of Dr FC, I couldn't have done it without his support and the support of my GP. My GP couldn't have supported me without Dr FC and neither of them would have felt confident without the specialist to call upon, but we've all done it in spite of, not with the help of. My big concern is that with the changes going on in the health service there won't be a Dr FC for the next person who needs him, and that would be even more tragic than the lack of rheumatologists.
So in answer to your question Dr FC, I'm not really sure how I've done all this, but I do know I couldn't have done it without you and I thank you for that. You are part of my how.
And yes, after everything I think you should say sod the GMC and go ahead, write "patient now has big boobs" in the notes. We've all worked damn hard for me to be here with any boobs at all.