Thursday, 29 January 2015

A Big Moan. Totally Fed Up with the Lack of Progress in Gender Dysphoria Treatment.

Another week, another failed promise to be phoned by a consultant.
Another week, another week in which the next appointment hasn't been arranged.  Another week in which no useful information whatsoever can be given me by anybody.

Another week of chasing and pestering and talking to the gender clinic with piss all results.  I have contacted the clinic every single week for the past two months.  Every time I am promised that I will be called back, either the next week or the next day.  Two months into the chasing and I have not been called back.  I say this, and complain, knowing that the staff are very busy and that patient numbers are outstripping staff hours more and more.  But I also say this knowing that my hormone dosage could be sorted in a five minute phone call and quick fax to the GP just as easily as in a one hour consultation and posted letter to the GP.

And every time my next appointment is as far away as it ever was.  At my last appointment, on 2nd September I was told it would be three months.  I started phoning in late November and was told it would be December.  Then that moved to January.  That moved to late January or early February.  The current information is that the consultant hasn't dealt with the January list, that my appointment will "hopefully" be in February and that I am at the very bottom of a waiting list.

It is fair to say I am frustrated and to be honest getting quite desperate.  I've already complained officially so there's no point in complaining, but I might do it again anyway.

Started self-medding again - yes, I'm back on the pill - because mentally I have to do something or go completely crazy in the process.  Advice today was to keep self-medding and get more blood tests done just before the next mythical appointment so I can say "here are the baseline results, here's what they are on what was prescribed, here's what they are on what you were going to prescribe, therefore here's what is needed."

In three days I will have 18 months of what they call "real life experience".  All that time has been spent working through the NHS system.  According to national guidelines I can be referred for surgery six months ago.  But instead I feel that I'm practically at square one.

Life as me is good.  Far better than it was two years ago even with all the difficulties of that period.  But the whole medical thing is as annoying as anything.  Getting me down.  It's fair to say that the medical frustrations, combined with certain other things, are not helping in the slightest and are slowly sending me in a direction I don't want to be sent in.

Yes, it's all getting me down.  But it can't get me too down because then they'll want to sort that out before dealing with the gender stuff even though it's the delays in the gender treatment that cause these problems in the first place.  I can't allow it to get me into a place where I'd need professional help.  Because that would mean I wouldn't get the professional help I actually need.  And that would make things worse and I'd need more professional help, further delaying what I need.  In a vicious circle.

Advice:  If anyone is planning on going through the medical side of transition either win the lottery and pay for it all privately or develop a level of patience that far outstrips that of Job in the Bible.

Sadly of course I'm not alone.  Many people under the care of the NHS gender dysphoria services are in the same position.  Some are in worse positions, with longer waits and more uncertainty.  And sadly, as things stand, nothing much can be done about that.  The staff, from consultants to receptionists, know this all too well and every one of them wishes that more could be done.  But without more funding, without more staffing, the wishes of staff, patients and the friends and families of patients cannot be granted.  Sadly at this time the situation is getting worse rather than better - because there are more patients coming forward (which is a brilliant thing) but not the funding to match the numbers.

Until that funding comes the situation will continue and people with gender dysphoria will continue to suffer.  Some will develop further mental health issues while waiting to be helped.  Some will end up in hospital.  Some will self harm.  And almost inevitably, unless every single patient has a superb support network, there will be suicides and attempted suicides.  But the funding situation is most likely to continue, and perhaps - in terms of funding per patient - get worse.  Much of the NHS is underfunded.  We all know that.  But it often seems as if mental health services are the poor child of the NHS and that gender services are the poor child of mental health services.


  1. I've heard it said that your progress is determined by which NHS authority you are receiving treatment. Some are more efficient than others but of course that might be due to better staff, less patients or any number of things. Some seem to deliberately drag their heels and progress is unnecessarily long-winded and drawn out as a result. I don't know under which authority you receive treatment but it seems they fall into the category I have described. By all accounts you have but six months left before completing your RLT which should put you into a more favourable position. Let's hope this is so Clare. It would indeed be better if you could have gone the private route but unfortunately that wasn't possible. I hope therefore that you will remain strong and patient whilst waiting for the treatment and operation you so desire. Hopefully it will be upon you before you know it.

    Shirley Anne x

  2. There is some difference between which GIC you end up attending. For the first appointments (as of last September), Exeter and Daventry were under 18 weeks. Leeds and Charing Cross have an inital wait of over a year. Here the wait for that first appointment has risen to nearly a year. Leeds had to close its waiting list and they had to here to recently at least for a while, because it was so long. I don't know if September 2014 was a typical month but here the GIC saw three new patients that month and received 18 referrals. In total across the country there are over 2000 people waiting for that appointment - and from that appointment to be referred to someone "qualified" to give a diagnosis.

    So slow! Yes, it was once slower. But it's getting slower again.

    The RLE requirement has dropped to 12 months now - but that doesn't make a lot of difference unless you start it well into being treated by the GIC. If you're like me and transition socially well before attending it doesn't mean diddly squat in terms of speeding anything up! So as of today I have 18 months and probably still have a long wait before getting a second diagnosis and referral - much as I will be pushing strongly for it at the appointment, whenever that turns out to be.

    There's a lot of difference too depending on which of the consultants' lists you're put on initially. So another lass, who had her first appointment two weeks before mine and who started RLE fifteen months later than me, is currently about eight months ahead of me in the process of treatment. That's merely because of being fortunate enough to be pretty randomly stuck on a different list. Good luck to her, I've nothing against anything that's happened to her - but it's very frustrating to be left behind when I'd jumped through the hoops even before arriving in the place.

    Oh well, it doesn't actually affect day to day life too much. I live as me and that won't be changed by drugs or surgery.

    Happily, and for a good reason I don't get abuse in the street anymore. The reason - I pass! I'll avoid getting into the politics of passing and the damage that the pressure to "pass" causes. I haven't done anything spectacular to "pass" - just a combination of being fortunate in my face and of walking in confidence in who I am. (Plus growing my hair again, laser treatment, and five minutes slapping on make up every day, dressing as me)

    Yes! I pass! It's great. Someone last week told me she hadn't realised I was "born a man" until I mentioned it. Yesterday she said it again and changed the language because she knows I wasn't "born a man" at all. And then said that my voice is definitely female. Nice. And, in a discussion of churchy things, I said that years ago I'd have wanted maybe to be a Catholic priest but there were a few things lacking. A new friend piped up with "Yes, there are a few little things you're missing." Yes, those little things! The confusion on her face when I said that wasn't an issue was wonderful to see. So encouraging that she didn't have a clue that I'm transgender and was pretty surprised by it. Great person, glad to have chatted at some length. Like at the end of Casablanca, at least potentially, "I think this is the beginning of a beautiful friendship."

    Those sorts of things are such a confidence boost, because when I look in the mirror I still sometimes think "Who's that ugly bloke?" rather than "That woman has nice eyes." It's good to know that people just accept me as Clare, as the woman I am.

    How's that? Totally complaining rant one day. Then days later such hope and happiness. The human psyche is an amazing thing!

  3. Well Clare I want to add to your confidence boost for I genuinely did not know you were pre. when I first came across your blog. I am happy that events are not spoiling your day-to-day life. You will get there you know even though at the moment your goal is barely visible on the horizon. Walk tall and you will see it though!

    Shirley Anne x


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