Worries about transitioning on the NHS

[Eris]

Hi, I'm new here, I'm waiting on my first appointment to speak to someone to the NHS to try and get the ball rolling.

I'm scared that they won't believe me about how I feel, that I won't be eloquent enough to convince them, that they'll try and label me as something else or just ignore me for financial reasons (it's funded through taxes and we're in a recession).

I've also heard that you may be forced to begin and continue RLE for several months before being prescribed hormones.

If there is anyone here from the UK who has experience with the NHS (particularly in Scotland) I would really appreciate hearing from you about your experience with the service and the stages you went through.

Thankyou for your time

[Padma]

Hi again . My experience of the process was this (and stage 2 is no longer necessary, since April last year; if the gender clinic has its own psychotherapists or psychologists, your GP can refer you direct to the clinic - so it's good to call the nearest clinic and ask what's required, unless this is already rolling for you):

1. June: asked my new GP to be referred to gender clinic - very straightforward, it's not their business to decide whether you're "eligible", that's what the gender clinic is for - so they should just refer you
2. July: referred to a consultant psychiatrist for assessment before referral to gender clinic - also very straightforward, they just want to make sure that if you have any mental health iissues going on, you're supported for them whilst you're transitioning (and to check whether your gender dysphoria is not a manifestation of a mental illness, which it very occasionally can be)
3. Sept: first appointment with the gender clinic, 3x assessments with a psychotherapist, every six weeks, to get my story
4. Jan: first appointment with clinic doctor

Typically, the clinic doc will want to see you twice before starting you on hormones - this means it's roughly 6 months from first time through their door to going on hormones (my story was different, because I was already on them by the time I showed up there, but otherwise the timeline is pretty standard).

Generally speaking, so long as you're not going to the Charing X clinic in London (who have a reputation for playing gatekeeper games), the gender clinic sees their role as that of enabling you to be your true self. And they have a duty of care towards you (as well as being accountable to their funding body), so they want to ensure that if you're going on hormones, it really is the right thing for you. Hence the wait. I was not put under any pressure to conform to any particular clothing stereotypes (I made it clear from the beginning that I'm female, but I'm not feminine). Our clinic is slowly but gracefully getting its head around some of us being non-binary in gender.

You will find people who have had bad experiences too, and no doubt some will have things to say here - it's good to hear a mixed bag. But I wanted to make sure you heard a good tale too.

ETA: This is all 2½ years ago, for me - I'm having surgery this May. The clinics and system in general is improving all the time. I hope you get to hear from some Scottish folk too.

[Eris]

Thanks Padma, this is somewhat reassuring.

In that case I would seem to be between steps 1 and 3 (I hope).

I'm not happy about the prospect of a six month wait, but I think I'd be happier if they told me that It would be six months. It would give me a target and make me feel like I'm making progress towards being who I am on the inside

two to two and a half years is kind of what I was expecting. hopefully one on HRT, One doing my RLE and then SRS after that I want to be a woman by the time I'm 25 (I've just turned 22) and you've made that seem pretty realistic .

I was wondering if you could tell me what kinds of HRT medication were offered to you by the NHS I'd like to look them up so that I can know what my options are going in.

[Padma]

Sure, if nothing gets in the way of that, it should be very straightforward now. The important thing is to get all your paperwork changed sooner rather than later, once you know what your new identity is going to be for certain. The clinic will help you with that.

As for going onto hormones, they're more likely to hedge and say something like "If all things proceed smoothly, it's possible that you'll be prescribed hormones after your second visit with the doctor." They won't make promises, because all kinds of unforeseen things come up in people's lives that make theme change their minds or hold things off for a while, and they don't want to disappoint you later on by not meeting their promises. So don't expect anything firm from them, is what I'm saying . But 6 months from first visit is fairly average.

[Eris]

Thanks Padma, you are a font of useful information

I was wondering if you could tell me the names for the medications that the NHS prescribed in your case, I'd like to read the possible side effects so that if I'm asked about them I can answer honestly.

I apologise if it's personal and I'm making a faux pas here by asking, I'm not sure about the etiquette, discussing this is all kind of new to me.

Thankyou for all of the help you have given me so far

[Padma]

You're welcome, I just soak up what I hear and read, and then try not to repeat it as Hard Fact . You're okay asking about medications, the only thing that's not acceptable here is to discuss dosages.

I started my transition privately (because I was about to move cross-country, and knew it could take a while to get into a new GP surgery and get referred - and because I wasn't broke, back then!) So I started on estradiol tablets and cyproterone (Androcur) anti-androgens. Then the gender clinic took over my medication, and switched me to estrogel (which works way better than the pills) and took me off the cyproterone, telling me I didn't need it. They were very wrong, so after a couple of months of testostyranny, I got my blood tested and went back to them with my results, and they put me on triptorelin (Decapeptyl) anti-androgen injections every 12 weeks instead, which has been more effective than the cyproterone.

The only noticeable side-effects I've had were an initial T surge and feelings like flu for a couple of weeks when I first had the injections (but never since), and food craving like being pregnant - after 30 years vegetarian, I can't go for more than a couple of days without fish.

It's very unusual these days to be prescribed spironolactone in the UK, though you'll hear lots about spiro on trans forums from people outside the UK. E gel or patches is less harsh on the body than pills, since you don't need as high a dose, and it doesn't go through the liver but straight into the bloodstream instead. It's a little more inconvenient, but then so is gender dysphoria, so .

It seems to vary from clinic to clinic even on this island, whether you'll be put straight onto E or be given anti-androgens for a few months first. Anyway, I hope you get some good people when you finally get seen. Bon voyage!

By the way, Erin is a nice name!

[Ronnie]

to get the ball rolling for me is i booked an appointment with my local GP and she got me a meeting with my local mental health team then they have both agreed to refer me to a Gender Specialist my appointment is very soon i can't wait i want to start HRT asap so i hope they do believe me and like u said about the RLE i hope it isn't 7 months because i think that wouldn't be a good thing i haven't got the confidence to go out full time before i feel confident enough just get an appointment with your local GP and they should refer you to someone with experience in this kind of things i got told by my nurse that you have to live 3 months in the other gender role before they will proscribe hormones you have probably heard this but don't self medicate its so dangerous you have to be very patient with this its takes months and even year to be helped by the NHS in the UK but I'm lucky to not have to wait long just wish it was the same for everyone who needed this help hope you i helped a little

[Cindy]

I'll just add in a very interesting conversation I had with a couple of psychiatrists from the UK at the recent WPATH meeting.
They are both gender specialists and supportive and I questioned the problems that people on this site have reported in getting help.

Because of the NHS funding model, if you don't have a 'problem' that is impacting upon your life, health and well being then there is a system reluctance to treat anyone for anything. The crude example they gave was (for the sake of my understanding) was if a person was incontinent and mobile they would be no help - as the system says they could get to the toilet and hence no support help from NHS would be readily available; even if it was a struggle and the person could not control themselves.

So how does this help? They said we (TG clients) need to emphasise that we are suffering because of our gender incongruence. Help would (should) then be given. If we are not 'suffering' and able to live normal lives no help is available. This needs to be hammered into your GP, who is effectively the 'gatekeeper'.

When you are referred to a gender centre you again need to make your distress clear, without putting on a show of a psychopathic loon or they then treat you as a psychopathic loon! (not meant rudely BTW )

The waiting list on the non private areas are long, and it is first in first served - basic supply and demand. Charing X is getting 1500 referrals a year. Way beyond its capacity. BUT once in all treatment from FFS, tracheal shave, vocal surgery, etc etc are freely available. IF you convince them it is needed for your health and well being.

They will treat any comorbidities first - which is against the SOC, but the NHS doesn't use SOC, they use the UK psychiatrists model of care (which was published in the Lancet last september or thereabouts).

The two women I was speaking to were not happy with the model, but it is what they have to work in.

I hope this helps a little.

[Eris]

Thankyou Cindy, this is exactly the kind of information that I needed to hear

I have seen my GP who has forwarded me to a member of the Mental Health team here. I have an appointment for the 7th of May. I guess I will be mentioning the many times I have considered suicide after all (previously when I was alone, unsupported and hiding who I was). Along with how I feel that hiding this core part of who I am has left me unable to connect to those around me and unable to develop as a person.

I will make it clear to them that if they do not help me then I will see if there's any way I can use a private referral to begin treatment on the NHS, (I'm a student, I can't afford private treatment) if that isn't possible I would regretfully begin self-medicating.
As I understand it they are required to treat people who would otherwise self medicate. If left no other recourse however that is a path I would go down

[Kaylee]

I'm not happy about the prospect of a six month wait, but I think I'd be happier if they told me that It would be six months. It would give me a target and make me feel like I'm making progress towards being who I am on the inside

I wouldn't get your hopes set on a 6 month wait, depending on the clinic you could be waiting over a year.

I went to my GP in May last year, got my referral to the Leeds GIC in August and according to the clinic should be seen by September this year, that's nearly 17 months before seeing anyone at the gender clinic...the NHS loves waiting lists...

[Eris]

I know, the main one in Scotland has a waiting list of 13 months for a first appointment which is just absurd. 13 months for any medical service is just not good enough. If a service is in such demand then they should allocate more resources. Of course that would be in an ideal world where we weren't going through an economic recession.

[NIP]

My suggestion is scrape together the money and go and see a specialist GP privately. I chose Dr. Richard Curtis in London, and I have nothing but praise for him after several appointments. If you have a good GP at home, they'll be happy to prescribe HRT and carry out requested blood tests on the NHS (as with private prescriptions and blood tests the costs will quickly add up to far more than the private consultations), and will liaise with a private specialist/consultant as if they were on the NHS (this part at least they are legally required to do). It's very helpful to get a diagnosis as quickly as possible, and privately done you can get this in a matter of weeks rather than months to years. You'll also get HRT a lot more quickly (and you won't have to wait for separate appointments to see endocrinologists), as well as support to have SRS (privately) in a year of being full time (as per international guidelines) rather than three (as per guidelines the NHS pulled out of a hat to save themselves a bit of cash in the short term). The long term cost of private consultations will be relatively low as the once the ball is rolling and you've had your initial sessions, the private specialist will only want follow-up appointments every 6 months+. A significant short term cost will be sperm storage, but you'll be paying this even if you receive care on the NHS. Bizarrely, and quite disgustingly, the NHS doesn't consider it necessary to preserve a client's ability to have children. You might be able to persuade a willing NHS GP to carry out the blood tests you need for private sperm storage.

Oh, and if you don't like your GP and they aren't helpful, shop around. It's your right to pick a GP at any surgery willing to take you. And don't hesitate to complain to PALS about a bigot GP. It's illegal, and they'll learn they can't do it in the future to anyone else. Especially when their medical protection agency refuses to pay for costs if they get sued for denying care to a TG/TS person.

[Eris]

Thank you for your input NIP, what you have suggested is pretty much what I plan to do if I feel that the NHS are gate-keeping me.
I have an appointment to see someone from the mental health Unit in my city in just over 9 weeks time. I currently plan to go to that appointment and see how helpful the NHS are here in Scotland.
I have heard them compared favourably against the services in England at this time.
If they tell me that I will have to wait a great deal of time (another 12 weeks for instance) for another appointment or generally seem unwilling to help then I will seek a private appointment with a view to acquiring an independent diagnosis. Though for me raising £200-300 is a little daunting

[NIP]

Thank you for your input NIP, what you have suggested is pretty much what I plan to do if I feel that the NHS are gate-keeping me.
I have an appointment to see someone from the mental health Unit in my city in just over 9 weeks time. I currently plan to go to that appointment and see how helpful the NHS are here in Scotland.
I have heard them compared favourably against the services in England at this time.
If they tell me that I will have to wait a great deal of time (another 12 weeks for instance) for another appointment or generally seem unwilling to help then I will seek a private appointment with a view to acquiring an independent diagnosis. Though for me raising £200-300 is a little daunting

I too understand that TG/TS care on NHS Scotland is significantly better than on NHS England, but I haven't experienced it first hand. The new NHS England care guidelines were copied almost verbatim from NHS Scotland's superior ones last year (though with a few less progressive revisions to save a bit of cash, and you of course need to fight with reluctant GPs because they don't even know these guidelines exist here), which resulted in much better care on NHS England. So you're lucky in that regard and it might not be necessary for you to pay for private consultations (and I imagine travelling to see the consultant would be a significant expense because the ones I know of are all, predictably, in the south of England). You might want to check whether NHS Scotland will pay for sperm storage (if you're interested in that, but I recommend it heavily even if you're not, because you can't know whether you might change your mind in the future, and there will be no going back) as the costs here have been the most significant in my care so far.

[Eris]

Hopefully I'll learn something from the experience that can help other people in my situation

In the unlikely event that another Scot actually joins the forum XD

[Danniella]

Hopefully I'll learn something from the experience that can help other people in my situation

In the unlikely event that another Scot actually joins the forum XD

Oh there are a few of us on here check out ( https://www.susans.org/forums/index.php/topic,155561.0.html ) that's where we tend to keep each other updated