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delirium happy

Just keep on trying till you run out of cake

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NHS bureaucracy
delirium pissed off
Oh NHS bureaucracy, how do I love thee? Let me count the ways.

OK, finished counting now. End total was zero.

Around about December or January or something like that, I saw Dr. Ashton, a local general adult psychiatrist with the NHS. Amongst other things I discussed with her on this occasion was NHS funding for the treatment of my gender identity disorder. The way we left things back then was that she would write to the PCT requesting funding, and then when she heard a response from them she'd get back to me and – provided funding had been approved – discuss where I was going to be referred to and such like.

Time passes. Winter turns to spring. Spring turns into summer. Sir Robin's minstrels die a gruesome death. June happens.

In June, I go and have another appointment with Dr. Curtis, my private psychiatrist in London, who I've been seeing while waiting for the NHS to get their act together. He increased my dosage of oestradiol from 2mg bd to 2mg td. He also prescribed for me spironolactone 100mg bd, with spironolactone being an anti-androgen (testosterone blocker). This would be a good thing, except for the part where I'm completely unable to take the spironolactone tablets. They are minty, and I hate, loathe and abhor minty things. Taking the tablets makes me choke and splutter and then feel nauseous for an hour or so afterwards. Needless to say, I gave up on these after not-very-long.

At this point, I spoke on the phone for a while with my mum, who is a GP and tends to be my first port of call when I need medical advice, and we discussed other anti-androgens. There were 4 that we discussed. First there was the spironolactone, which I've just mentioned. Then there was cyproterone acetate (aka Androcur). I actually took this for a while 7 or so years ago, and it was effective at what it did. Unfortunately, it's quite nastily hepatotoxic and is also a clinical depressant. My mum was not happy with the idea of me taking that again, which is good because I had absolutely no intention of ever doing so. Then there was finasteride, which my mum is familiar with from patients with prostate cancer. However, the mechanism of finasteride is to inhibit the conversion of testosterone into dihydrotestosterone. This is handy if you have prostate cancer or male pattern baldness, but probably worse than useless for my circumstances.

And then there was goserelin (aka Zoladex). This is a sub-cutaneous injection, which would be once every month or every three months, and medically speaking is doubtless the best of the lot. The problem here is that it costs in the region of £100 per month, which is somewhat on the expensive side.

Are you still with me? Good. This is where it starts to get interesting.

Based on this potential cost, we decided that it was about time to start chasing up the NHS funding that I mentioned back up at the top. I delegated my mum to do the phoning around and chasing up for me, because I really didn't feel up to dealing with it. She phoned up Dr. Ashton's secretary only to discover that she wasn't Dr. Ashton's secretary any more, because Dr Ashton no longer worked there. She's now the secretary of Dr. Nallapuneni (whom I have never seen). The secretary told my mum that she believed my funding had been approved, but wasn't sure and would get back to me. OK, so far so good.

Last Thursday, I received a phone call from Dr. Nallapuneni's secretary to update me. She confirmed that the funding had been approved, but that she couldn't tell me anything more because she'd been unable to get through to Charing Cross hospital. This was the first indication that not everything was going exactly as I had hoped, but I figured I'd just sit on things and wait until I had the full story. She told me hat she didn't work on Fridays, so she'd contacted King Street surgery (my GP) and asked them to follow it up for me.

Sure enough, I receive a phone call from them on Friday. They tell me that the referral to Charing Cross has all gone through, and that I should have received a form I need to fill in and send back to them, which was sent on June 20. Sure enough, I check my mail, and there it is, hidden amongst a pile of unopened paper-spam.

However, this is still a distinct "huh?" moment, since I had not actually asked to be referred to Charing Cross. In fact, I quite distinctly did not want to be referred to Charing Cross, since they have a Reputation, and not a good one. While I appreciate that I've had no first-hand contact with them, and that what I've heard is likely somewhat hyperbolic, they do tend to come across as utter bastards, and I'm less than enthusiastic about having any part of my mental health in their care.

This was why I left things with Dr. Ashton as "let's get the funding first, then figure out who's going to be providing the care". What I would actually like is for the NHS to fund my seeing Dr. Curtis, though I doubt this is likely to happen. What I would willingly accept is that I continue seeing Dr. Curtis privately, paying him out of my own pocket, but operating on a shared care basis, such that if he said I need some particular drug or service that I could get that on the NHS and not have to pay for them. What I'm not so keen on is being forced to go to Charing Cross if I want to get any funding at all from the NHS (especially as if/when I come to have surgery the cost for that will be in the region of thousands of pounds).

And just to make matters even more fun, the letter from Charing Cross said, essentially "reply within 14 days or we'll make you go through the whole referral process again lololol!" Which, considering it was dated the 20th means by this Wednesday, I think.

So, on Friday, I rang up Charing Cross and said "Um, yeah. Got your letter. Need more time." to which they replied "Oh, sure. The two weeks thing is just to annoy people. We dont' actually pay any attention to it." That's one hurdle down. I then phoned up my GP's surgery to make an appointment with my GP, Dr. Orr. Amazingly, there was actually an appointment available as early as this morning, which I snapped up.

So this brings me up to today, when I went to see Dr. Orr. I explained the situation to him, and he did a bit of a brick wall impression at me. The basic gist of what he had to say to me was two-fold. Firstly, if I wanted to query anything, I'd have to directly contact the PCT, which is fair enough. Secondly, that he almost certainly would not be willing to be a part of any sort of a shared care situation. The explanation he gave was that the private sector is less regulated than the NHS, so he had no way to be entirely certain that the specialist I was seeing wasn't a quack, and therefore that he wouldn't feel that his ass was covered in writing out a script for an area of medicine he had no specialist knowledge in. I am unsure as to whether this is abject bullshit or not.

Since then, I have received two phone calls, one from Dr. Nallapuneni's secretary and one from the King Street surgery, both of whom have given me contact details for the PCT.

At this point, there are several things I need to do:

Firstly, I need to speak to my mum again, to plan my next course of action.
Secondly, I need to figure out precisely what my rights are in this area. I know that the political landscape around the NHS recently has been about patient choice and public-private partnership, but I don't know precisely how this translates into the real world.
Thirdly, I need to actually contact the PCT and ask them what's actually going on, and what precisely the funding approval is for.

But for now, I need to push it all to the back of my mind and ignore it for a day or so, because it makes my brain hurt.

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Dear god... I appreciate that they want to be 100% sure the patients are sure about the whole process so the docs don't get bitten on the arse if something goes wrong, but do they have to make it so goddamned complicated?! The amount of paperwork and approvals is just ludicrous. Gah!

Good luck with it all, especially the Charing Cross part. Hopefully you won't get treated badly or messed around.

Yeah, I'd quite like to switch to a medical condition where I could get competent treatment without having to fight for it or pay through the nose. This one is getting rather frustrating.

*snorts* I'm not sure that's possible. I have a hard enough time getting competent care for my diabetes. Though, if you wanted to get diabetes or hypothyroidism, that would solve the prescription charges problems.

I think the real trick is finding a competent GP and hanging onto them.

Charing Cross can be survived. It does, indeed, have A Reputation, but I will caution against all the scare stories you have probably heard.
Come and talk to me about my experiences & bounce the ideas around.

Oh, right. I forgot you went there. I shall definitely take you up on that and poke at you for your wisdom and experience and such like. When's a good time to find you online on IM?

Crikey, it's making my brain hurt too! But I'm pretty newbish to most medical conditions beyond eczema and all those types of skin problems. Those I excel at. I hope the paper work gets better and you can get what you need out of it though without getting messed about. Good luck :) /salute

Thank you kindly!

Christ...that´s a shitter isn´t it? and by ´it´ I mean the whole fucking thing. I sort of see where Dr. Orr is coming from but then it sounds very close to being a fobb-off/get-out-of-clause. Hurray, at least, that you have a real life person in your Mother to consult on all this, I think I would have got lost in the burocracy a long time before this.

On a completly flippant note...where´d Dr. Ashton go? She was nice. Although when I saw her in the winter of Lancaster mental health service meltdown (4 year waiting list, woop!) she was a little disallusioned with the NHS....

I don't know what happened to Dr. Ashton; I just know that she's not there any more. This could mean anything from "killed by freak meteorite" to "left in exasperation over NHS crapness". When I saw her, she was still quite disillusioned. There had just been a change to the PCT boundaries here, so she was somewhat hoping that things would be getting better. Of course, judging by the fact that I was told the waiting tome for CBT would probably be about 12 weeks and still nothing has happened on that front would seem to indicate otherwise. But yes. I liked her as well, and am a little sad she's gone. It would be nice to know that if I ever had to go back to the general psych that there'd be someone there that I liked. Oh well.

And thank you for the general supportiveness. It's appreciated.

I have spiro from 3 different manufacturers.
Most of the NHS stuff has no coating and is minty. Cheap generics.

The stuff from IHF has a coating so you don't get the minty taste.
( Hey NOBODY is taking my spiro away. Dear GP - any shit from you and you get optimised out of the loop. love becky. )

Talk to a pharmacist - see if he can get tablets with a coating for you.

Yay for labyrinthine dealings with the bureaucrats. Oh, wait, no. What's that thing that means the opposite of yay?

Oh, yes. "Die, die, die!" That.

I'm taking spironolactone, and it is *horrible* stuff. I don't know what the point of the zombie mint is, but the only way that I can choke the pills down is to tip my head back with liquid already in my mouth, drop the pill into the very back of my throat, and swallow immediately. And it is still an ordeal that I look forward to with dread. Ugh.

Psst. You. I'm online and not asleep right now! If such thing is of interest to you.

Oh, argh. That was *decidedly* of interest to me. This is what I get for posting comments immediately before leaving the house for extended periods. Actually, this is probably what I get for leaving the house, period.

p.s. Spike is sitting by my foot and he just licked my toe. Spike is weird.

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