Speeding up NHS transition

[tesseract49]

Hi everyone. I live in the UK. I went to my GP about 2 1/2 months ago after I had already sent them a letter explaining my situation. He told me that he would refer me for a psychiatric assessment and it may take about 8 weeks. I rang them about a week ago and they said that they haven't received a reply from the commissioning group yet. Is it normal for it to take so long just to get diagnosed with gender dysphoria in the first place? I have heard that my nearest GIC has about a year long waiting list. I feel like at this rate I will never get hormones. Is there a way that I can hurry them up? All I want is hormones. Couldn't I just convinced them to let me go straight to the GIC? I would be willing to sign a form that says that I don't care about what happens to me.

[kira21 ♡♡♡]

You have a few possibilities. Firstly, trying to get the NHS to do anything fast is like trying to herd cats.

OK, important things for you now are...

The document with the current protocol is here:
http://www.england.nhs.uk/wp-content/uploads/2013/10/int-gend-proto.pdf

Your GP can provide you with 'bridging endocrine treatment' (see page 17) if they feel its in your best interest health-wise (for example if you were considering self medicating - they might want you to be supervised rather than buying junk of the net). My GP did. I had to push it a bit, but he did it. It is after all, only the same tablets the prescribe as part of HRT for postmenopausal women.

You should ask for a referral directly to the GIC. I believe they all prefer to take referrals directly from primary care now. I know at least Notts do and I am relatively confident that is the same elsewhere.

Read up on that here:
http://www.nottinghamshirehealthcare.nhs.uk/our-services/local-services/specialist-services/prescribed-services/gender-clinic/referral-appointments-and-clinic-letters/


The next thing to do is check the waiting times here, where someone requested all details from the GICs under the freedom of information act:
http://uktrans.info/attachments/article/341/PatientPopulationSept14.pdf

Ask your GP for a referral to the next nearest GIC. You are supposed to be provided with choice under the NHS, so they should have to respect your request.

Then start reading up about what you are entitled to and what the various healthcare professionals should be doing, as often, they have no idea.

Good luck.

Kira x

[tesseract49]

Thanks very much. I had no idea that they could do that. I may ask my GP if I can have bridging endocrine treatment. The only problem is that I don't think he knows anything about gender dysphoria. When I rang up they said that he requested advise from this commissioning group.

[calicarly]

So glad to see there is someone in the News staff with knowledge of the UK NHS system Kira! What a gem for the people in the UK you are on this forum. So thanks in behalf of everyone.

Tesseract,

What GIC are you gonna be going to?

Most important step is to try and get on that waiting list ASAP. As Kira said, guidelines from late 2013 indicate that referral for psychiatric assessment is no longer required to access a GIC as, effectively, the GIC itself takes care of evaluating and diagnosing you for gender dysphoria on your first appointments and upon diagnosis you get invited into the pathway. Your GP can refer you directly.

If your GP isn't very familiar with the process it's worth informing yourself and being involved in the process as much as you can. Posting on this forum was definitely a good start .

Best wishes!! X

[RosieD]

Oh, whoops! Wrong question at the wrong time. Sorry but I have been struggling with the NHS for a few years now and about the most useful advice I can give is to learn patience. You can smooth your progress through the process a great deal by managing your own care. Find out the contact details of the person you have been referred to, make sure they have received the referral, follow up with a phone call to confirm whether an appointment has been booked if you haven't heard anything by the time you should expect to (generally about a month before the appointment).

It's utterly shedloads of hassle and at the end of it you'll run slap bang into the Charing Cross waiting list, currently 68 weeks and growing.

As I said at the beginning, sorry but it's the wrong time to ask this question if you want me to be at all positive.

Rosie
1 week into that expanding 68 week waiting list.

[alexbb]

i got referred to charing cross and found the 68 week wait unacceptable so had my referral sent to daventry. they say they have it and itll be in the next 8 weeks. result. maybe give them a call.

then
"After a period of assessment, typically two to four consultations shared between two clinicians,
one of which must be medically qualified, a provisional diagnosis should be agreed. "

"Once a diagnosis of gender dysphoria or atypical gender development is made, an Individual
Care Plan (ICP) should be agreed between the GIC and the patient, after which the patient may
access some treatments (to include psychotherapy, speech therapy and facial hair reduction) "  (hey free laser??)

then your gp can give you hrt, from what i understand. seems to be the take home message is settle in, enjoy the now and never quit. its a 5 year marathon. or that time forrest gump ran accross the usa!

[Crissie22]

I went to my gp in early November for my first talk about being trans and by the beginning of December they sent me for blood tests and I had to make an extended appointment with the gp to get a direct referal to the Leeds GIC the GP also had to asses how much upper body hair I had and measure my testacles I also had to fill in a questionnaire . So I got my direct referal to the GIC it's just the long waiting list that is bothering me now I think a phone call is in order . As for possibly getting HRT from the GP that is something that is definitely worth me asking about

Chrissie Rose xx

[RosieD]

I didn't know that Daventry were set up to do surgery. Or am I misunderstanding you Alex?

Rosie

[alexbb]

Ah no I dont know about surgery. They quote 68 weeks as the wait for an initial consultation, which i was shocked and dismayed by, hence shopping around. sorry if ive confused things!!

[Squircle]

There are only three options for surgery with the NHS. Oliver Fenton, Philip Thomas or Tina Rashid (under the guidance/supervision of Philip Thomas). You are given a choice of those three when you get to the referral stage, and it's up to you to do your research on them.

The NHS is still a bit stuck in the whole 'full time before hormones' thing, so it's often difficult to get them to budge from that. And they will generally time everything from the date at which you can prove you started RLE. For that reason I started my RLE way before I got my first appointment, and whilst I had to wait a year for that, I've moved through it all as quickly as is possible since. It's still taken a long time though. I'm at Leeds, btw. The people there are lovely and they will do their best to get people through as quickly as possible as long as they are convinced that it's right for the patient. I think they get a fair few people who go along having taken no steps forward themselves (eg coming out to family/friends/work, RLE, starting hair removal etc) and expect to be given hormones, and they are more cautious moving forwards with those people. I'm not saying it's right, that's a seperate debate, but it's the way they work. Your gp can prescribe bridging hormones but mine flat out refused; he said it basically wasn't an area he had any knowledge in and that he wasn't prepared to take on that liability, and instead he'd rather leave it to specialists. I tried a different gp at the same surgery and she said much the same. So it's pot luck really.

Good luck!

[mfox]

And they will generally time everything from the date at which you can prove you started RLE.

I understand they still use the date printed on your Change of Name Deed Poll to determine your RLE start date.  So It's a good idea to get one of those ASAP once you've decided on your new name.  You don't need to pay for it, just print one from here on nice paper, and get 2 people who know you in your new name to sign it as witnesses:

http://freedeedpoll.org.uk/

Changing your name doesn't mean you have to get your IDs changed right away, but you should at least get your new name updated with your GP surgery.  Any supporting evidence helps (utility bills with your new name, GP registration letter in your new name, etc.).  You can apply for the European Health Insurance Card (EHIC) for free under your new name, and get a photo ID in your new name under the PASS scheme:

http://www.pass-scheme.org.uk/

All this helps show you're serious and in my opinion should be the first step in the process.

[Squircle]

I understand they still use the date printed on your Change of Name Deed Poll to determine your RLE start date. 

They do use that but you also have to prove that you transitioned in the workplace or education. I had to take a letter from my boss. They won't consider it full time if you are living as female at weekends but not at work, for instance. Although if you change your name on bank accounts etc then you kind of have to tell work! I don't know how they deal with unemployed people, I guess proof of change of name from the job centre or something? 

[SorchaC]

You have a few possibilities. Firstly, trying to get the NHS to do anything fast is like trying to herd cats.

OK, important things for you now are...

The document with the current protocol is here:
http://www.england.nhs.uk/wp-content/uploads/2013/10/int-gend-proto.pdf

Your GP can provide you with 'bridging endocrine treatment' (see page 17) if they feel its in your best interest health-wise (for example if you were considering self medicating - they might want you to be supervised rather than buying junk of the net). My GP did. I had to push it a bit, but he did it. It is after all, only the same tablets the prescribe as part of HRT for postmenopausal women.

You should ask for a referral directly to the GIC. I believe they all prefer to take referrals directly from primary care now. I know at least Notts do and I am relatively confident that is the same elsewhere.

Read up on that here:
http://www.nottinghamshirehealthcare.nhs.uk/our-services/local-services/specialist-services/prescribed-services/gender-clinic/referral-appointments-and-clinic-letters/


The next thing to do is check the waiting times here, where someone requested all details from the GICs under the freedom of information act:
http://uktrans.info/attachments/article/341/PatientPopulationSept14.pdf

Ask your GP for a referral to the next nearest GIC. You are supposed to be provided with choice under the NHS, so they should have to respect your request.

Then start reading up about what you are entitled to and what the various healthcare professionals should be doing, as often, they have no idea.

Good luck.

Kira x

Great post, Well done

The NHS is outdated, under funded and overworked. They are expert gatekeepers. I did my time with them using the GIC in Newcastle and I know they are trying to see everyone as soon as they can, I was also told they will allow in some circumstances people to get hormones before being full time. That is decided on a case by case basis There has been allot of great advice in this thread and I'm sure if you can be patient and do what you need to you'll get there

Good Luck with it all

Hugs

Sorcha 

[mfox]

The NHS is outdated, under funded and overworked. They are expert gatekeepers.

I have a lot of sympathy for NHS GPs, with the stress and lack of funding. The London GIC seems to keep patients waiting close to a year before being seen for the first time.  I don't really see how it's ethical for a GP to refer anyone there until they can better meet their obligations, and there are other less burdened GICs.  Something to consider when asking for a referral.

[SorchaC]

I have a lot of sympathy for NHS GPs, with the stress and lack of funding. The London GIC seems to keep patients waiting close to a year before being seen for the first time.  I don't really see how it's ethical for a GP to refer anyone there until they can better meet their obligations, and there are other less burdened GICs.  Something to consider when asking for a referral.

I don't blame the staff most of whom do their best. You are right that CX is over burdened so what is needed is more funding and more doctors. Most of NHS could make the same argument so I gave up on it 

Hugs

Sorcha 

[AnonyMs]

Hi Sorcha,

there can't be too many people with experience in two countries. It would make for a really interesting topic in a new thread if you wrote about your experience and how it differs, the good and the bad.

[Squircle]

I have a lot of sympathy for NHS GPs, with the stress and lack of funding. The London GIC seems to keep patients waiting close to a year before being seen for the first time.  I don't really see how it's ethical for a GP to refer anyone there until they can better meet their obligations, and there are other less burdened GICs.  Something to consider when asking for a referral.

I wonder out of interest what percentage of people referred to the GICs actually transition. I'd assume the number to be fairly high, and the percentage for those transitioning socially but not surgically to be slightly lower. At Leeds if someone has been living full time for a good while before they get there then the staff do their best to get them through the process quickly, but with others it's more complicated, there may be other issues, a lack of commitment to transitioning etc and with those people it's understandable that they take more time to reach a diagnosis. Perhaps it would be better if there was more funding for gender therapists who could more efficiently do some of the groundwork and help those people who need that help to untangle their feelings.

It's a tricky situation but it's difficult to know what would work best.

[SorchaC]

Perhaps it would be better if there was more funding for gender therapists who could more efficiently do some of the groundwork and help those people who need that help to untangle their feelings.

Before my GP was able to refer me to the GIC I needed to see a Sex Therapist Dr Pop, The PCT refused to fund things without that according to my GP, Dr Pop told me it would also speed things up with GIC if I went that far. Newcastle now has a Psycho sexual Counsellor and a CPN to work with all referred until you get to see one of the 2 Psyches. I think it works and helps the person transitioning with some of their eraly issues so that when they get an appointment at a GIC they are better prepared for the system

Hugs

Sorcha 

[SorchaC]

Hi Sorcha,

there can't be too many people with experience in two countries. It would make for a really interesting topic in a new thread if you wrote about your experience and how it differs, the good and the bad.

That's something I could do in a few days maybe when I get some time to do it justice

Hugs

Sorcha 

[tesseract49]

I am still interested in this 'bridging endocrine treatment' thing. How easy would it be for me to get that? Could I threaten my GP with suicide or would that be bad.