Sometimes I Hate the NHS

Don't get me wrong, I'm ecstatic that we have free healthcare. I've heard enough horror stories of other countries to be damned grateful for what we have. But having said that - it could be so much better. I mean, it may not be free in other countries but they also don't have to wait six months to see a specialist.

Anyhow. I eventually managed to get to an appointment with my GP for the first time since seeing Snowdon. Although it wasn't technically my GP, just the locum who was on duty. Turns out that although Snowdon talked with me about seeing physios at his hospital and we discussed occupational therapy and talked about how I should probably be referred to Dr Ho's new clinic at the Manchester Royal Infirmary as she was more of an EDS specialist...he'd not actually referred me to any of these places. I asked my GP if he could refer me and he just didn't seem sure about any of it. Sent me away with a 'scrip for Nortryptiline, as Snowdon suggested, and that was that.

Then this morning I got a Choose & Book letter through. Now, I'm sure we all know that Choose & Book doesn't actually mean Choose, but it usually means I at least get to see what's available before picking the only available appointment. Not so this time. This time I have a 'selected clinic' and these instructions:

'Your selected clinic has been notified of your need to book an appointment with them. They will contact you to agree an appropriate date and time for your appointment.'

Wonderful. Now I get to wait around for them to call. Which they'll probably do whilst I'm asleep as I can't anticipate when they'll call and can't force myself to stay awake all day everyday with my sleep schedule so fucked. Or quite possibly I'll be awake but too much of a bundle of nerves to answer the phone - most times when it rings I ignore it.

I like these things to be on my terms, dammit.

But that's not even what I'm mad about. What I'm mad about is the 'selected clinic'. It's for physiotherapy, but not the physios at Dr Ho's clinic, where I was meant to be referred, or the physios at Snowdon's clinic, who I was meant to be seeing 'in the meantime'. No, I get to go see physios at the mobile care unit.

I've been to this mobile care unit before. It's basically a bunch of portacabins. The 'wrist doctor' I saw there had no idea what he was doing, put me in a bunch of pain moving my wrists around (which subluxed, but he didn't know the word and laughed at me when I tried to explain), didn't listen to a word I said and had never heard of EDS. He sent me for utterly useless tests and bloodwork. I then spent three hours having three nurses - and finally that doctor again - poking me with needles trying to get some blood. I came home with holes in both arms and both hands, a lovely colourful array of bruises, and they managed to get no blood out of me.

Okay so I didn't see any of the physiotherapists there, but I'm not holding my breath that they'll actually know anything about EDS seeing as this is not in any way a rheumatologist or connective tissue disorder clinic. And sending bendies to physios who don't know about bendies is a bad bad BAD plan that has done so many of my bendy friends permanent damage.