22

Jumping Hoops – A Rant on the Welsh NHS

Today, as I learn that my legal caseworker is leaving her job and my MP can’t be of any help in local health issues, I am far from being in the best frame of mind…

Let’s quickly recap… Early last year, my husband and I went to our GP to finally pursue gender reassignment, as is our right under NHS protocols. However, the NHS in Wales is more restrictive than its English counterpart, as the GP correctly informed us, and accordingly set up the various hoops that we would need to jump through to receive treatment. These were…

Referral to the community mental health team for assessment.

Referral from the CMHT back to the GP.

Application to the “gatekeepers” (nothing to do with Ghostbusters) for funding.

Once funding obtained, referral to the West London Mental Health Gender Identity Clinic – the only one available to Welsh NHS patients.

A year’s waiting from said referral to our appointment times.

First GIC appointment.

…and that is as far as we have got, at present. However, our first appointments did go very well, and as far as London goes we have no complaints. The clinicians we saw were sympathetic and eager to help, and in my case even provided me with a prescription for HRT to be handed to my GP. Hormone therapy is, of course, an essential first stage of transition, and one that patients in England (and even some Welsh health boards) can obtain even before their first appointments, to dissuade them from self-medicating on internet-bought hormones… which I have been doing for over a year now. My GP, unfortunately, said that they could only help with authorisation from London, so you can imagine how pleased I was to finally obtain some.

Having imagined that, you can now imagine how displeased and shocked I was when my GP practice – a Cardiff Bay-based clinic that had been recommended to me as trans-friendly – still refused treatment. Their latest justification is that there are proposed changes to the Welsh gender identity care pathway, and they want those implemented before taking the responsibility. They assured me it would not take long.

About a week ago I went to a trans information meeting hosted by a local NHS official, who spoke on these proposals and told me they may take up to three years to implement… though she did also tell me – as one might expect – that my GP is making pathetic excuses, and has a responsibility to treat their current patients according to the existing gender care provisions. Also, much to my surprise, she informed me that our GP had lied when they claimed there was no provision for speech therapy under the Welsh system – though both Cal and I had expressed a great interest in it.

She even told me she would be in touch to help me challenge this state of affairs… but unfortunately was not. I have since told my caseworker and my MP – to the sad lack of effect stated above – and contacted my Welsh Assembly Member, but have heard nothing back. That leaves me, at present, at a bit of an impasse, where all I can think to do for now is express my dismay and disgust that things have had to come to this. Unless the local health authorities will support Cal and I in our transition, there is nothing much London can do all by itself (monitored HRT being, as far as I know, still being a prerequisite for surgery, and Cal not being able to self-medicate in any case – testosterone being far too dangerous to take without professional help).

Our worst fear, though, is that they are playing for time, hoping that if they can stall us for long enough then inevitable NHS cuts will impact on the whole gender care service and they will simply be able to deny us care and get us off their monthly budget for good. Paranoid of us? Possibly, but that practice hasn’t exactly been enthusiastic or sensitive in helping us. I recall asking them if they could prescribe Vaniqa hair reduction cream just after my GIC referral… only to be answered with a blunt “we can’t give that to men.”

Though, to be fair, one doctor down that practice has been sympathetic to us both, though the last thing he said to me was “the squeaky wheel is the one that gets oiled.” Cryptic at the time, but in retrospect we both think he was giving us broad hints that the system is not our friend, and we will have to fight tooth and nail if we want to see this through. Not something I excel in, but I guess it can’t hurt to learn.

If anyone has any suggestions for our next manoeuvre in this battle, please pass them along. I could use some fresh perspectives after today’s disillusionments.


Gloriana’s Masque – My steampunk fantasy novel / competition entry, free to download.

Gloriana – fay queen, freedom fighter, and freelance inventor of WMDs – plans to save her people from the industrialised tyranny of Lucinia. Alas, she can only do so by calling on even darker powers…

6

Steampunk Spam Time…

This is one thing I truly hate doing, and I can assure you have only succeeded in doing through quite considerable amounts of motivational talk on the part of friends. However, I have a novel now up for a competition – with the hope of eventually finding a willing publisher – and it rather badly needs some love.

As far as sales pitches goes… and bearing in mind the time I worked in marketing was one of the shortest and least successful of my “professional” life… it’s completely free to download, fully proofread, very steampunky, and loosely inspired by The Phantom of the Opera (though no particular version. As some of you may recall the story in general rests among my pet obsessions).

If any of you or your friends feel it might be your sort of thing, please do take a look at the site, or share this around.

Gloriana’s Masque

The Republic of Lucinia was once a kingdom founded on feudalism, magic, and tyranny. Following the revolution, it is now founded on technology, propaganda, and more efficient tyranny. Magic, though practised by a few, is seen as quaint bordering on laughable. The Alvere – a magic-using fay culture – have been totally subjugated by Lucinian science. Some Alvere have been assimilated as lowly citizens, while others have been isolated in the puppet state of Alvenheim.

A mysterious, disfigured rebel Alvere calling herself “Gloriana” invades Alvenheim with an army of mercenaries, equipped with advanced weapons of her design, and sets herself up as queen. The Republic sends an envoy: the reformer Secretary Kasimir, sympathetic to the plight of the Alvere. He is charged to secure peace, but failing that he has orders to liquidate Gloriana. Reluctant though he is to follow them, he also distrusts the queen’s ambitions.

Her ambitions, however, prove to be far loftier than he could have imagined. Gloriana has discovered the truth about their world and the forces that govern it, and believes that she can manipulate these forces to the benefit of all humanity. She is, alas, disastrously wrong…

22

Year of Politics and Procrastination…

I always suspected this blog would tail off rather than go out with a bang, alas, but although I must take part of the blame for that in a sense it has been unavoidable: in the early stages of transition one’s mood was of constant panic, and it was a matter of priority to keep very busy and pro-active to have some sense of control over it all. Additionally, things seemed to move more quickly. Now, nineteen months down the line, things seem a lot slower-paced, although by no means resolved. Cal and I are both now officially patients at the London GIC (Charing Cross) and technically on the gender care pathway, although our GP practice continues to refuse us any interim care and I am still self-medicating HRT based on rough figures which have so far not killed me, touch wood (As ever, this practice does not come recommended). However, a trans social meeting I attended recently gave me to understand that we should be receiving care from our GP by now, so a complaints procedure is looking increasingly like our best option. It’s stress we could live without, of course, but we knew this would be a struggle.

It might help, of course, if we were transitioning at a less volatile time, but it seems whenever we glance at social media these days there is a new reason to fear the course of global events and what this may mean for us as LGBT+ people, as well as NHS patients: the Orlando massacre, the rise of the right and hatecrime, Brexit, the apparent disintegration of the Labour Party, Donald Trump, etc. Being introverts never made so much sense… Unfortunately, I now find myself as an introvert at a loose end, having finished the novel I was working on and lacking inspiration for a project to follow it. I am hoping to start some voluntary work later this month with a Cardiff LGBT charity, and Pride Cymru is coming around again (13th of August), while Cal is hoping to upgrade his working hours to full time. Modelling, alas, has fallen off considerably – not that I ever expected it to go huge – though I do have a few shots from a training shoot I did a couple of weeks ago at Mark Cleghorn Studios (Barry, Vale of Glamorgan), based around the “Little Black Dress” theme:

Not that I would say I am remotely satisfied with how I look, nor ever likely to be, but it was nice to be asked. Validation has been in short supply of late, for us both.

Thus, we continue to support each other, and I really can’t imagine how I would have got through this without Cal, but the motivation and stamina to be “out and proud” is difficult for us both to maintain, even on mere social media, so my apologies for my very inconsistent presence this year. I hope I will feel more in the mood for visibility in the future. I know invisibility does not serve my community very well. It can feel awfully stress-relieving, though, but I will seek a healthy balance.

5

3 Reasons Why I’m Not Self Publishing

Been quiet of late, I know, preoccupied with the novel I have just finished and cannot decide what (if anything) to do with. This post, however, eloquently explains why I have ruled out one seemingly obvious option… Point three particularly chimes with my own thoughts:

“I want to be able to say that someone besides myself was willing to put their reputation on the line and say that I wrote a book that’s worth paying money for. That I was ready to be published, not an author with potential, putting their book out there too early because when I’m self publishing, no one can tell me it’s not ready.”

Lindsay Kitson - Author and Pilot

I had a family member ask me recently whether I had considered self publishing my novel, instead of going to all the trouble of finding a traditional publisher. I have thought a lot about this – and I have a number of reasons, even aside from the reasons I have never bought a self published book. This isn’t about which is better, it’s about what I want and what’s best for me.

I do better being managed.

I’m not a terribly self motivated person, but I work well under pressure. Give me a deadline, and I can make that deadline. Just tell me what you need me to do.

Self publishing, I’d have to manage myself, and I suck at that. As John Scalzi mentioned in his article on Amanda Palmer and her indie Kickstarter project, “This is particularly the case when it comes to writers, artists and…

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0

Dear Brexiteer. What we need you to do now.

Totally off-topic, but this has been all too much on my mind of late. I dread to think how this may affect Cal, whether he will be able to remain in the UK after the dreaded exit, and even if he is allowed to, will he be able to keep accessing NHS services (which he needs to transition).

I have no hope to offer, alas. The exit seems like a bad decision every way I consider it, except from some very vague desire or fetish for national self-sufficiency (which I strongly believe is a myth) or xenophobia. So I offer healing words from someone else…

frpip

So well done, first of all. You listened to the arguments, the same ones I listened to. You heard all the same information I did, you listened to the same debates that I did, but you voted to leave. And you won. I take that – it was a democratic process and sometimes in the democratic process you lose, as I have done.

The referendum has activated the political energies of people who haven’t been interested in politics for some time, so we are told, and many of them are like you, who voted to leave. So here’s the plea of the losing side to you now.

Firstly, don’t stop – don’t stop with your political passion and activism, because we need you now. We need you to be active, we need you to keep talking to the people who you trusted with this vote, and we need you to…

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15

Fighting Back

orlando

Cal returned from the GIC last Tuesday, and the news was all good: like me, he has been granted a second appointment in February, at which point all going well he will be approved for HRT. The clinician seemed absolutely charmed with him (only naturally), and they had a good conversation. The fact that we both have had such positive experiences with the London side of things is certainly something to be very grateful for. It touched upon a subject of grave concern to us both right now, though: the UK’s impending referendum on whether to remain within or leave the European Union. The clinician was pessimistic, and when we consider the implications of leaving (which now seems the likely outcome) it is hard to feel too blithe about our future. For one thing, if it throws the UK back into recession, the NHS will suffer more cutbacks, so our transitions could be stopped by simple market forces. For another, it is liable to make the UK more isolated and right-wing, which rarely goes well for LGBT+ people (no more than one might expect of a Trump presidency…). Even if neither of those scenarios develop, we are bound to be affected as Cal is French, and will thus have to change nationality (at high expense) or risk losing his job, his right to stay without a visa, and his rights to NHS treatment. If Cal has to leave the UK to transition, I will of course leave with him, which will thus stop or at least hugely delay my own transition. Thus, if you are one of my Brexit-supporting work colleagues and you wonder why I am less than friendly with you these days, you can probably work out why now…

Furthermore, though, it has been next to impossible for anyone in the LGBT+ community to be particularly happy and easygoing this week, in the wake of the Orlando massacre. Cal and I attended a memorial vigil in Cardiff Bay (image above) and were moved to see so many of us and so many allies come out in support and recognition. The priest at my very LGBT-friendly church also gave a sermon and prayers on the shooting (acknowledging that it was an anti-LGBT hate crime, unlike a certain prelate). Still, it is hard to get away from the sense that the world is still not exactly on our side, whatever the mansplaining, cisplaining voices at work would have me believe: “Of course it won’t make any difference to you if we leave the EU. You people have full rights now. We’re a tolerant society.” And so forth, while I bite my tongue.

Cal thinks we may have spent too long biting our tongues, and now is the time to speak out, fight back, and be uncompromisingly courageous and visible. He has determined to make this year his first Pride appearance, and thus our first Pride as a couple. We have also initiated complaints proceedings against our GP, whose non-response to our progress at the GIC continues to infuriate us. Such combative behaviour does not come naturally to either of us, but it helps to remember that we have, in such a short time, gained many friends within our community who are also affected by these issues. God willing, this will be the year when we cease to be the timid little trans couple living almost like recluses for fear of offending, and not before time. Perhaps the world could use a little offending…

keepkissing

9

“Wolves of Dacia” – Call For Readers

oldcomp

Finally, I have a finished draft of the vampire novel I have been wittering on about for ages. If anyone is interested in reading it and offering me whatever feedback they feel able to, good or critical or scathing, please drop me a PM. Synopsis follows…

Genre – Dark Fairytale / Dieselpunk / WW2

Pages – 409

Words – 176,988

Berlin, 1933: Andreea Petrescu, a Romani gypsy biology student, is expelled from university by the Third Reich. She returns home to Transylvania, to face a grim future of poverty, misogyny, and the stigma of having associated with outsiders: a fact her insular community regards with distrust. Just before she returns, her mother – a gifted medium – strikes a terrible deal in order to protect her.

Eight years later, Andreea’s circumstances have only worsened: her mother is dead, her father is unsupportive, her community is as estranged from her as ever, and fascism has spread to Romania. The Nazi-allied government takes measures to deport gypsies to concentration camps, forcing Andreea and her father to go on the run from the SS. Their flight leads them to seek refuge in ancient catacombs, where they soon discover that they are not the first to have taken shelter.

Though her superstitious father is repulsed by their discoveries, the scientifically-minded Andreea finds herself fascinated, and drawn into the activities of the mysterious resistance unit that has set itself up in the area, and of their leader, the charismatic and ruthless Miss Bendice. She seems eager to recruit the brilliant young fugitive to her cause, and offers Andreea a unique opportunity to escape from her degrading circumstances, but at no insignificant cost.

As Miss Bendice’s hubristic plans escalate to a world-threatening climax, and as the SS death squad closes in, Andreea finds herself caught in the vice. Forging unlikely friendships with a naïve Wehrmacht lieutenant, an amnesiac teenage vampire, and a scatterbrained Welsh parapsychologist, she finds her knowledge, her courage, and her integrity put to the test as she struggles to survive, save her loved ones, and stay true to her principles, though it may entail sacrificing everything she has dreamed of.

© Eleanor Burns, 2016.