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Should I be worried?... NHS

Started by Stella Stanhope, January 24, 2014, 08:17:50 PM

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Stella Stanhope

Hi there all! :)

Arggh! I don't like feeling the need to spout my worries off into the ether and onto this forum, as I don't want to bring everyone down by gettin' heavy (I sound like a hippie!) but I'm just...grrr and argh....at my wit's end with my whole situation regarding the issues of trying to do something productive about being trans, as it feels like a big hole I can't dig myself out of, no matter how many professionals I ask for help in digging with. The more I try and do productive things about this, involving professionals & therapists, the more I seem to feel pushed away and made to wait for nothing in particular This is like trying to solve a Rubix cube that's fighting back (to quote Skyfall).
I tried for years to ignore all this and "act normal", but now I'm doing the responsible thing and looking into my issues and situation, and it seems that instead of finding answers, I'm being led along paths to nowhere and with regard to family and friends, they've begun to selectively hear what they want to & are clinging on to their idea of who I am with an increasingly iron fist.  The more I paddle, the more I sink. Much of the time, I wish I'd just carried on being secretly dysfunctional, keeping myself-to-myself and having my head in the clouds was infinitely more rewarding then involving, joining & attempting to connect with the rest of the human race, currently is.

Right now I'm awaiting to here back from the NHS GIC as to what their plan of action (if any) is. They've kept completely silent about about what they think of me, literally, this is a complete cliff-hanger. I have no earthly idea what the doctors are thinking about me, when this is a situation which ultimately could lead to my having VERY different lives in just a short while. They suddenly cancelled my appointment just prior to the week I was going for the last "decision" appointment. And now my next appointment is  4 months away, which may or may not involve a decision. I have no idea as they don't want to tell me. Their correspondence to me in the meantime has been polite but absolutely stone cold and with no further info. I've been very warm to them since visiting, and have genuinely thanked them for the wonderful therapy sessions they have given. I really have appreciated them.

I cannot stress this enough, I am very grateful to the NHS and the GIC staff. I also do not mind if I've been put back on the waiting list because of more urgent cases they need to attend to, I truly understand that the NHS is stretched (two of my housemates are stressed-out doctors). So if that's the case, that's fine, but I wish they'd just give a little bit more reassurance, even email based. So far I feel like I'm basically being told in a very roundabout and polite way to just sod off. I may, however also be over-thinking this and simply panicking due to the gravitas of my situation and because I don't have any experience with this whole standards-of-care stuff and trans-issues in general. I am really wondering if I'll turn up at this long-awaited decision appointment to find they'll just say "right, well we think you're insane", or just "we don't think there's any issue and you've wasted our time, please go away".

So my question to those who have gone down the NHS route is - Does this seem like standard practice and the usual drama when it comes to such matters, and there's most likely nothing to worry about? Or does it sound like I've inadvertently put my foot in it somehow, and am being pushed back in the hope I'll just forget about the whole thing?
There are no more barriers to cross... But even after admitting this, there is no catharsis... I gain no deeper knowledge of myself. No new knowledge can be extracted from my telling. This confession has meant nothing.

When you find yourself hopelessly stuck between the floors of gender - you make yourself at home in the lift.
  •  

ZombieDog

I can't reply to your questions about the NHS, but I wanted to touch on the feeling of 'taking one step forward and two steps back' that you mentioned.  I can fully understand that feeling.  It's like your tires are spinning out on ice or a patch of gravel and you can't get anywhere.  But I assure you, once you get your traction(and I'm sure you will) that you'll zoom ahead and make up for lost time.

Keep your chin up and with luck one of the lovely ladies(or gents) will have answers to your NHS questions.
  •  

Joanna Dark

I don't know anything about the NHS but I do know this: persistence wins the day. Keep at it and you'll get it. BTW, I lovelovelove your style of writing. Plus, I just got a hunch things are going to go your way. I can feel it.
  •  

Tori

One thing about the NHS. You learn patience. Get used to it. Transition is not fast. It can be like watching paint dry.

Also, 90% of transition, at least to the world around you is non-hormonal, it is presentational. If you intend to be seen as a woman, hormones will likely do very little of the work for you. They will take your muscles and still require you to do the heavy lifting.

No need to doubt yourself or your prior actions, they likely had no effect. If you are trans and you know it, you are trans.

Here's a question. Is there any legal way to pay out of pocket for treatment while you wait for the govt go get off its arse? That is the Yankee way.


  •  

Stella Stanhope

~ Hey everyone! ~

Thanks for the wise words and encouragements! I hope that one day I'll have enough experience and wise words of my own, to provide helpful responses like your's.

Yes Tori, it is indeed slow, which in many ways is completely understandable. I won't consider going Private until I know what the playing-field looks like on the NHS end. I wouldn't be able to afford it without obliterating my wage-packet and racking me up an obese-amount of devastating debt, I'm certain, so it's not logically feasible. How IS it possible? Is that what you did?

The NHS route been around two years so far, which I've heard is either the standard time-frame, or is very sloooow, depending on people's varied experiences. I am aware, and its fair enough, that as I don't visit the GIC crying and dressed in a skirt paired with a handbag, that I'd have to have a pretty good reason for owning a more androgynous appearance. As well as needing to be able to explain in-detail why I feel I'm still as legitimate as those that are more emotionally demonstrative and forward in their presentation. I would however, feel a bit concerned if I'd have to be that traditional expectation in order to be seen as a legitimate case. A cis woman doesn't have to ever be seen crying or wearing a skirt to be seen as a woman, and neither should a non-binary trans-person.

              ~                  ~                 ~

The therapists at the GIC seem open-minded & have asked some excellent, and quite tough, questions to probe why I feel the way I do and why that makes me believe I am trans. This has been exactly what has been needed, and my answers and report have (from what I think) demonstrated that I'm a non-binary person who is naturally gender-fluid, yet ultimately more suited to the female end of the biological spectrum due to my identity, personality and strong feelings regarding my current form. Yes, that sounds pretentious and long-winded :-p But in my case, there's been quite a few factors which have complicated my working-out of this identity. Because there's less stand-alone words and phrases in our language to use to convey this, (because ways of thinking are so binary and simplistic) - I have to explain who I am in long sentences, instead. (As you can imagine, the GIC sessions have been a multisyllabic gender mine field! So I can understand being seen as more of an unusual case)

My presentation to the GIC and in general isn't "female", yet it certainly isn't "male". Its a noticeable mixture of both overt masculine elements and female elements so that I can perform two tasks at the same time: 1. Ease my dysphoria by adding proper femininity and 2. Also having just another male stuff to keep discrimination at bay. No matter how much more dysphoric or binary I ever become - If still have to look biologically male, then my wage from my job and my safety are of more importance then ticking people's "female expectations" boxes. Society & the system plays transexuals like fools. You can't beat the system, but you can play the system to get the best deal out of society in your bad circumstances.

A typical outfit to the GIC and work consists of - women's skinny jeans or women's office trousers, paired with a woman's blazer. Shoes are women's boots or shiny brogue-type things. Women's coat with a nipped-in waist. Eyebrows styled, but purposely not overtly arched. Long hair either put into a suble up-do, tied back or left free. Sometimes I apply a bit of eyeliner and powder, sometimes not. My concession to masculinity is usually a small male shirt and tie, my deep voice and a brown utiltarian satchel that does not look anything like a handbag. So from a distance I basically look female, until close-up which is when people see the maleness, and thus take their cues from that. So far, this combination both makes me feel better, yet also allows me to keep my job. However, this no-man's land of presentation is NOT a long-term solution for me. I hate looking like a very effeminately-styled guy with manly facial features.

              ~                  ~                 ~

Yes ZombieDog! That's a brilliant analogy, one to add to the recent analogy thread! The more I try to put more power into my identity confirmation, the more the wheels spin. It'd be wonderful to get traction, definitely! Thanks for the encouragement too. Has similiar experiences happened to you? (apart from the country difference).

Thank you Joanna :) I'm glad you like the style. I'm not sure what style I have though! Umm, I read alot of period novels and period-dramas, so maybe I sound slightly old-fashioned (in a good way) perhaps?

There are no more barriers to cross... But even after admitting this, there is no catharsis... I gain no deeper knowledge of myself. No new knowledge can be extracted from my telling. This confession has meant nothing.

When you find yourself hopelessly stuck between the floors of gender - you make yourself at home in the lift.
  •  

stephaniec

I'm sorry, I probably can't help much because your system seems so brutal compared to the US system. And from the posts it seems Australia is living in the 1600's. But the problem seems to be is that you have no other choice but that system your in, which sucks, so you might just have to play their game for a short time. I don't really know a solution for you, sorry.
  •  

AdamMLP

If you'll excuse a guy sticking his nose in...

In theory they cannot keep your medical records from you under the Data Protection Act 1988.  You may have to pay a fee, between £10 to £50, but you should be able to apply to access them.  However, some GICs such as Nottingham state on their website that, "It is the policy Nottingham Gender Clinic not to copy initial assessment reports to our patients. Thereafter copies of letters are sent as a matter of course. The letters do contain medical and other special terminology so if you are unsure about anything in them please ask your Gender Specialist at Nottingham Gender Clinic or your GP."  So in that respect I wouldn't be too worried about them not giving you any details on what they're thinking about you.

I can only guess, but I would presume that it was in case they brought something up that they were querying and the person in question read the letter and decided to change their mannerisms/act/lie in order to get what they wanted from the GIC quicker.  To some degree it makes sense, stopping abuse to the system, but it's just another form of gatekeeping and it shouldn't be necessary for people who genuinely need the help.

If they are uncertain about whether you are or aren't trans then they should continue to provide support for you until they come to a decision, so I wouldn't be too worried about that at this present time.  When is your appointment rearranged for?  I'm wondering if it's after the new financial year starts in April because I know that Charing Cross at least has no more funding left for the rest of the financial year.  I have no idea if that's anything related though.

Good luck, I know very well that the NHS is a slow, sluggish, nightmare.
  •  

Tori

Believe it or not Stella, I am a Yankee who has found a way to get the govt to pay for transition... but because we run on private medicine here, I was able to find a doc who would treat me, and use non-trans language in order to get paid by my insurance provider.

I just know private is always an option, and you may be able to take that option too, if you look around. There are doctors who are trans or are sympathetic to what trans folk have to do in order to start treatment. It does not hurt to look.

You may have to pay out of pocket, but only for a short while, and while that is nowhere near as cost effective as NHS treatment, HRT is not very costly compared to many medical issues. Besides, starting HRT before you see the NHS may actually speed things along once they actually see you because it confirms how serious you are.


  •  

nikkit72

Hi Stella,

I am going down the NHS route myself and yes, it takes aaaaaaaaaaaaaaaaaaaaaaaaaaaggggggggggggggggggggeeeeeeeeeeeeeeeeeeeeessssssssss.....

You need to be the one pushing for things as everything is a , pardon the french, half arsed attempt at helping you or delaying you. Most of the time I think they want you to give up so they do not have to continue with treatment after all you mean nothing to them and you are just a number in a database.

I may have not read your previous posts thoroughly enough, but, if you present to them as an androgyne, does that not present the therapists with  somewhat of a dilemma as to what hormones should be running your systems. I guess I may be speaking from a binary point of view and the fact that you want to be taking female hormones, but it looks like they could use this as an excuse to delay/forget endocrine treatment for you.

Is it not worth saving up £200 and going to see a gender specialist privately. This will not hinder any future treatment with the NHS. At least this way you will get some ones undivided attention and far swifter progress by all accounts.

From my current experience with things, it is not just the delays with the medical staff themselves, but the incompetence of the administration and the endocrinologist/GP. The NHS is riddled with inadequacies and you need to push every step of the way I am afraid. But not too hard as to annoy them. It is kind of like balancing an egg on top of a bowling ball or juggling with sand.

As the late great Barry Sheene once said, "Dont wait for your ship to come in, swim out and meet the bloody thing".

Good luck.

Nikki
  •  

RosieD

I would like to echo what Nikki said. The NHS is a bit like an elderly elephant, unable to move with any speed and  liable to forget what it was doing when it gets anywhere.  What has worked for me so far is making sure I had the names and phone numbers of the doctors secretaries, agreeing and noting any dates and ringing about a month ahead of an appointment to ensure that it is still going to happen. I am am a little concerned that you feel transitioning will affect your employment prospects. The Equality Act 2010 extended coverage to include gender expression so if your employee does start misbehaving you have a very strong legal framework to encourage them not to.

Rosie.
Well that was fun! What's next?
  •  

Jayne

I can't post a link but the NHS have new guidelines for treating trans patients, they came into effect late last year.
The major changes are:

1: You should NOT be made to present as your new gender as a requirement to start HRT, the reason for this is that it may put a patient in danger if they do not pass in public.

2: MTF's should get 8 treatments of electrolysis on the NHS to facilitate reoval of facial hair (previously you got no help with hair removal)

3: FTM's should now get their masectomies performed as part of the treatment (previously they had to fund this privately)

Your GIC should not judge your determination to transition based on how you present, I had to fight my GIC for over 2yrs under the old rules as i'm waiting for elecrolysis funding & cannot wear make-up for medical reasons & then within a month of the new rules coming in I was started on E.
My GIC frequently change my appointments a few weeks before i'm due to go but they always make sure the new appointment is within the same week.
I get sent a copy of every letter my GIC send, you have the right to request this. I strongly suggest you make the request as several letters have gotten to me before they got to my GP so i've been able to go to my surgery so they can take a copy & speed the process up.

My final piece of advice is never cancel an appointment, my last employer kept refusing to give me time off & if you're the one who cancels the appointment then London GIC will make you wait 6 months for the replacement.
  •  

nonameyet

i love the doug stanhope reference in your username, but i have no advice.
Just delete my profile. im done with this site.
  •  

Carol2000

Quote from: H, H, H, Honeypot! on January 26, 2014, 07:13:07 AM
I would like to echo what Nikki said. The NHS is a bit like an elderly elephant, unable to move with any speed and  liable to forget what it was doing when it gets anywhere.  What has worked for me so far is making sure I had the names and phone numbers of the doctors secretaries, agreeing and noting any dates and ringing about a month ahead of an appointment to ensure that it is still going to happen. I am am a little concerned that you feel transitioning will affect your employment prospects. The Equality Act 2010 extended coverage to include gender expression so if your employee does start misbehaving you have a very strong legal framework to encourage them not to.

Rosie.

The above is very good advice and I wouldn't try to read too much into what has happened to you regarding the NHS. Unfortunately, these things happen and appointments have to be cancelled and re-arranged.

It happens if you go private too. I arranged to see an endocrinologist privately rather than wait a year or more to see him via the NHS.

It turned out the next available appointment was two months away, which was OK. Then that got cancelled meaning a total wait of four months and a large fee at the end of it.

Sometimes the whole journey to GRS can be one frustration after another, so don't take it personally. Give them a ring and tell them you would be willing to take a cancellation should one come up.

Above all, keep positive and keep smiling. You look fab in your avatar.
Caroline
  •  

ConfusedHumanUK

Quote from: Jayne on January 26, 2014, 08:37:08 AM
I can't post a link but the NHS have new guidelines for treating trans patients, they came into effect late last year.
The major changes are:

1: You should NOT be made to present as your new gender as a requirement to start HRT, the reason for this is that it may put a patient in danger if they do not pass in public.

2: MTF's should get 8 treatments of electrolysis on the NHS to facilitate reoval of facial hair (previously you got no help with hair removal)

3: FTM's should now get their masectomies performed as part of the treatment (previously they had to fund this privately)

Your GIC should not judge your determination to transition based on how you present, I had to fight my GIC for over 2yrs under the old rules as i'm waiting for elecrolysis funding & cannot wear make-up for medical reasons & then within a month of the new rules coming in I was started on E.
My GIC frequently change my appointments a few weeks before i'm due to go but they always make sure the new appointment is within the same week.
I get sent a copy of every letter my GIC send, you have the right to request this. I strongly suggest you make the request as several letters have gotten to me before they got to my GP so i've been able to go to my surgery so they can take a copy & speed the process up.

My final piece of advice is never cancel an appointment, my last employer kept refusing to give me time off & if you're the one who cancels the appointment then London GIC will make you wait 6 months for the replacement.

I'm glad someone's posted this. I've been absolutely crapping myself at the prospect of being forced to present before HRT - I cant do that, I'd likely pass out before I got to the front door!

When did the new changes start, as I'm still seeing a lot of fairly recent articles and posts about the 'old system', and people saying you still have to do the 2 years RLE before HRT :/
  •  

nikkit72

You can DO NOT need to do 2 years RLE before HRT. It is just that the process can take so long with the NHS that it can seem like that long getting anywhere. Unfortunately, depending on where you live, some NHS boards still have not adopted the new guidelines. But then again, as has been said many many times, hormones maketh not the woman. HRT will not get you through the front door.
  •  

AdamMLP

I'm pretty sure that these are the new NHS guidelines that's being talked about: http://issuu.com/bethseymour/docs/nhs_england_interim_gender_protocol/1

Although not all places know about these guidelines, at least as far as GPs go.  I'm currently having a massive struggle even getting referred to a GIC because of my GP not having a clue whether he can refer me, where to refer me to, or how the funding is sorted out.  I think I first went to him on the 17th October, and I'm not that much further now, only I got him to agree to refer me, but the last I heard on Friday he couldn't understand a simple message I'd left asking him to contact the GIC to learn how to refer me because he was going about it in the wrong way and they'd agreed to speak to him.
  •  

Stella Stanhope

Oh wow! So much information and helpful posts :)

Susan's is like the CIA or Mi5 of transgender Intelligence gathering! :P Maybe the mods should be issued with official cards and certain powers, by the government.

Anywho, Stephaniec - I'm happy to tick certain boxes and checklists to safeguard my own health, sanity and also to safeguard the NHS. I have no problem with gate-keeping, so long as its not needlessly troublesome. I see your point about basically seeing how to best convey my legitimacy and playing the game though. Thanks for your comment, worth remembering.

~                ~               ~

Lxndr - (that's an intriguing handle!) Some very good points there, I had heard that it is illegal to withold records, but I've also been told that it is legal in certain circumstances... Worth a shot though, asking them. Though, I'd hate to annoy them, and I don't want them thinking that I don't trust them, etc. Its really not the case, I'm just concerned as it feels like this is going nowhere and time is evaporating.

As for the new-financial year comment - that's an excellent thought! And might well be a major factor in delaying the date. It would make perfect sense, if their budget has run out, and naturally they wouldn't straight-up tell me this, hence the lack of information passed to me. This has re-assured me a bit, thank you! Yes, my appointment is after the new financial year.

~                ~               ~

Tori - thanks. Yep, a friend of mine who transitioned successfully, went private, and frequently extols the virtues to me. And I should imagine that would look favourable on the NHS, if I had already started, as it would show commitment etc. What holds me back from going private (and not just the money issue) is that private doctors are pretty much only interested in taking your cash. And I'd be concerned that they'd not be interested in any checks or analysis. I hear that one can get hormones after just one trip to a private clinic, but I think this is quite scary. I do like having the reassurance that there are gatekeepers who are spending more time looking into my case, rather than just taking my money. It seems very much that its either all-or-nothing in the world of transexual treatment - there's either too many hoops to jump through, or too little. I'd like some middle ground where there was an emphasis on spending time on making the right choice, yet also not making it harder and more problematic at the same time.
Lots to think about.

~                ~               ~

Nikkit72  -  that quote "Dont wait for your ship to come in, swim out and meet the bloody thing", is very apt! That's a good mantra, thank ye!
Yes, that was a major topic of conversation  - what is my true identity considering that I identify as androgyne, and therefore what's the best form to go after. Through elimination I'm confident that I'm far closer in identity to female, than male, however I'm definitely a non-binary, hence why androgyne as an identity fits me. But yet a female form would be more practical vehicle for that androgyne identity to live in. If I were a cis-woman, I'd be a major tomboy, but prefer ultimately being female.
I may well have to do more to be certain and convince them, and this would be fine, as ultimately I want to preserve my health and I don't want to make a mistake for my sake and the NHS'. I don't have a problem with investigating more and waiting for any treatment, but when it's 6 months between each appointment and I don't get much information in return, then I start to feel that its all half-arsed on their part. Grrrr and arggghhhh :p

~                ~               ~

H, H, H, Honeypot! (another amazing handle name, haha, that's brilliant) The "NHS is like an elderly elephant" comment, is spot on! That's a great analogy. Poor elephant I say. As for work legislation, its great that the government has put this legislation into place, but ultimately it won't do diddly squat t stop you getting the sack. And there's always a hundred reasons why you can sack someone, and give those reasons instead of the real reasons.

Basically I work in a close-knit office, which is part of a factory complex filled with working-men. Right now, they just think I'm an eccentric and possibly gay due to my wearing a mixed wardrobe of girly clothes and guy clothes. However, if I were to have to change my name to a female one and change my gender marker - then that would be crossing the magical mystical line in society whereby you're suddenly a freak. And men don't like freaks that pretend to be ladies. And so management would slowly find a way to sack me, in order to keep the peace. There's one of me and 1,500 of them.

Everyone makes mistakes or arrives late at work from time to time, and I do too, so they'd just use any old tiny incident to fire me. Therefore the whole issue of trans discrimination would never even make it to court. And that's what happens all the time I guess. I read on this site about people getting sacked for something apparently unrelated, but it just so happens that they transitioned just x months previously. That's not a coincidence. Management simply found a legal way to sack them for being trans so they'd get away with it. That's what HR departments are for sadly. But, hey ho, best to be positive.

~                ~               ~

ConfusedHumanUK - The new NHS changes sound exactly what is needed. That's far more grown-up, pragmatic outlook. Good to see that the 6-year-old child's logic that most adults in authority have, has been kicked a bit.  Ahh yes! I miss other appointments for things all the time, but I've always arrived at all the gender appointments, right from the start at least an hour early to mentally prepare and ensure I'm not late. My gender meetings really are the only things in life (apart from work) that I'm absolutely cast-iron scared of arriving to late.

I must head off to comfy Bedfordshire now (IE sleep), but its been great reading all the replies. Clarified a few things and such. Thanks everyone! :icon_wave:



There are no more barriers to cross... But even after admitting this, there is no catharsis... I gain no deeper knowledge of myself. No new knowledge can be extracted from my telling. This confession has meant nothing.

When you find yourself hopelessly stuck between the floors of gender - you make yourself at home in the lift.
  •  

Tori

I am happy you expressed your respect for gate keeping.

I went with informed consent, and girl, let me tell you, going from no medical treatment to HRT in a week was frightening and fast. Of course, I responded well to HRT so the fears were short lived, but wowza! For a while there I was like, "WTF was I thinking?"

There are virtues to the slow way and virtues to the not so slow way, but a middle ground would be lovely.


  •  

Jayne

Quote from: ConfusedHumanUK on January 26, 2014, 02:37:40 PM
I'm glad someone's posted this. I've been absolutely crapping myself at the prospect of being forced to present before HRT - I cant do that, I'd likely pass out before I got to the front door!

When did the new changes start, as I'm still seeing a lot of fairly recent articles and posts about the 'old system', and people saying you still have to do the 2 years RLE before HRT :/

The new changes started last july/august, you do not have to do 2yrs RLE to start HRT but may be required to do 2yrs RLE to be eligible for GRS.
The new protocols should give gender therapists more leeway in treating each case on an individual basis but we'll see how this pans out over the next year whilst they get to grips with the new system.
It is stated that transitioners should automaticaly get electrolysis but i've been waiting for almost 4 months for this funding to be approved, one of the reasons i'd like this to be done on the NHS is that I get such severe eczema that any elecrolysis treatment will have to be closely monitered by my dermatologist (when I get one but that's a whole other whinge). Hopefully this will get resolved soon but they may be waiting for the new financial year before they approve funding.

@lxndr, as i'm on an xbox I can only view the header for that link but it looks like the right one, the dates certainly indicate it's right.
I read it cover to cover when it came into effect & it certainly seems to be a huge improvement over the old system, I urge every trans person in the UK to read this so you know your rights.
It would also be helpfull for everyone to keep the link safe as i've had to e-mail this link to a previous Dr to educate him & his staff on the new protocols.
  •  

kira21 ♡♡♡

Using the new guidance which allows the prescription of bridging endocrine treatment whilst waiting for GIC to prescribe, I have just got my GP and endo to come together and prescribe me hormones while I am waiting. I collect my first script from them tomorrow.

It was a lot of hard work and I had to be very pushy, but it worked. Just thought that might be useful.