I should be in the Pyrenees, cycling from one end to the other, right now. I get updates from the guys who are doing it, and they're having a blast.
Why am I not there? I hear you ask.
Well, when we were in the planning stage, my ecsema was so bad that I couldn't even contemplate being away from medications for a couple of days, let alond a couple of weeks, especially if it was going to be a lightweight trip, with consecutive long days in the saddle. The thought of how bad it would be in terms of skin loss, bleeding and itchiness didn't even bear thinking about.
In the meantime, I've been trying to get onto another, potentially life-changing medication- in fact. I've been trying since June and lets say, it hasn't been plain sailing in any way shape or form.
You may know that I've been on Methatrexate for a year now. It's an immunosuppresant that is (amongst many other things) meant to reduce the build up of excessive skin cells, which should reduce the itchiness, scaliness and general nastiness of escema. It kind of worked for a bit, but in the last year I have had to be on actual steroids to reduce big flare ups, despite being on Methatrexate. In medical parliance, I have "failed treatment".
This is where it gets fun.
So I have to have regular blood tests to make sure that I am not becoming too immunosuppressed. These are taken at my local GP surgery, sent to the local hospital where they are checked, analysed, put onto a system which then gets pushed to my GP, whereupon it also gets pushed onto my NHS app on my phone, where I can check my bloods as well. All well and good.
In June I was referred to that hospital to the dermatology clinic to try to get me on the new, fandagled medication as my GP is unable to put me on it. I was told there would be a wait of about 6-8 weeks before I'd get an appointment- ok, fine.
I call up after 8 weeks to see if I had an appointment yet, or was still in the queue- and was told- goodness me, there is an appointment that had come free in 2 Saturdays time in the afternoon. Grand. So we went along to the hospital on the Saturday, having spent the last 2 weeks in increasing amounts of discomfort, to have my appointment.
Whereupon, I was told by the dermatologist "I don't have any letter about you, I don't have any of your bloot test results, it seems that you've been to a private dermatologist to get on methatrexate, and I don't know why you're here- if you're already on Methatrexate, I can't see why you need to be under two dermatologists to be on methatrexate".
Gobsmacked would be a word I could use. Been waiting for 10 weeks from the referral- how on earth could she not have the referral letter, where on EARTH did the idea that I'd been to see a private dermatologist come from? and how could she not see my blood results? They'd been processed in THIS actual hospital!
I did a very good job of controlling my temper, and, well, the upshot of it was that nothing happened and I was utterly utterly livid. She kept saying I had to "fail treatment" in order to be put onto the next medication, and when I asked what *that* meant- it was "use methatrexate for a year without improvement"... But- I've DONE that. Apparently not according to her records- so she booked me in for intial blood tests and a chest x-ray to get a "baseline"- which seemed kind of odd, considering I have at least a years worth of blood tests to show baseline and bloods on methatrexate.
Later that week I had an appointment with my GP, who not only showed me the referral letter, but also printed a copy out for me.....
So- I go home and phone the dermatology secratery- of course you can't talk to an actual doctor- and asked about what had happened. The secratary seemed confused, saying that *she* could see my blood results on the system. What? Ok- how about the referral letter? No- apparently not. So I scanned and emailed the referral letter to her to attach to my profile- why and how it isn't there, I have NO idea. I then called about a week later to make sure it had actually been attached. Apparently it has.
Great, next step- x-ray and blood tests. I go to the hospital (the same hospital, mind, that has been testing and reporting on my blood for the last year, that I have been getting on my NHS app), have my x-ray and full bloods done. Brilliant, all well and good. I wait a few days to be told about the results. Nothing. No email, no call, no message. Ok- check on my app- nothing. It's like they haven't been done. Ah man- I'd better check with the dermatology secratery - and leave a message.
I get a call back the next day- oh, yes, my bloods and x-ray have indeed been done. Yes, they are on the system.
So why can't I see them?
Sorry?!
Why can't I see them? I'd like to be able to compare them with the rest of the Blood tests I've had for the last year.
Oh- no-one has ever asked that before. Um. You'll have to get your GP to ask us for them.
Again. Gobsmacked. All this information is linked to my NHS number. It's not like it changes from place to place. The information is relating to my health. If I wait another 8 weeks to see a dermatologist, that information is going to be out of date by- oh- 8 weeks. It would be really interesting to know what is going on with my actual health. Oh- and if my GP requests the results, it has to be by letter- which was the way the referral got sent- yes, the one that the dermatologist doesn't seem to have.
So here we are in October. I've been waiting since June to see someone/anyone who has any idea about who I am, and has the ability to help put me on a new medication. It's SO hard to actually get hold of anyone. I didn't even know the doctors name that I eventually got to talk to. There is no-one to call, it all seems like a massive, faceless monolith, designed to make it as hard as possible to get any information about your health as possible.
I *know* people in the NHS are working as hard as they can, but this disconnect, terrible communication, seeming inability to care about patients and complete lack of continuity of care makes it all seem like no-one really has a clue about what is going on anywhere.
Yes, I'm still waiting to see someone. No, I still can't see my blood results. Yes, this has a massive effect on how I talk to and communicate with my patients as a physio- there are small blessings in everything.
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