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Health Service ~ UK waiting times for HRT...again?

Started by Chrissty, January 06, 2010, 07:52:55 AM

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Chrissty

There have been a number of heated discussions about HRT waiting times for MtF in the UK again, so I thought I would take another look at the more recent reports on UK sites here.

This information is only based on a trawl thorough a few larger sites and looking at more factual reports. I would also comment that the reports I looked at were from transitioners well over the age of 18, and therefore making their own healthcare decisions. I did not look at Scotland, where I understand the situation, and funding to be significantly better than England where I am based.

As expected, most comments were on CHX in London, but then it is still the largest so this is to be expected. Other regional clinics seemed to have less discussion, but overall, similar timescales were discussed.

Starting from scratch with no RLE, the first visits to a gender clinic seem to be 3 to 6 months after initial visits to a GP doctor. This usually also involved a "local" assessment by a local "general" physiologist before referral to the clinic.

Most clinics seem to be operating on around 3 months between assessment, with most not providing HRT letters until after 6 to 9 months (2 or 3rd appointment). The only exceptions seem to be where undisputable documented proof of extended RLE before attendance was provided, or in some cases where extended self medication was involved. I use the word "assessment" rather than therapy, as the session reports seem to be very heavily gatekeeper orientated with little counselling. In a number of cases an extended RLE period before HRT was required.

Most commonly 1 to 3 more months for tests and prescription/letter from a specialist, with treatment normally starting with androgen blockers, and estrogens not added until after a further 3 months or more.

Final prescription and ongoing blood monitoring usually being carried out by a local GP doctor between clinic review visits.


....So as a baseline, in the US system you can usually get on balanced HRT after around 3 months of therapy/counselling and a trip to the endo = 4-6 months. Usually if you have a healtcare plan, you can get at least some of the HRT and therapy paid for. GCS can be completed within 18 months from starting but you need to raise the funding.

In the UK NHS system you can expect to wait 10-18 months to just get blockers. It is then quite possible to string this out to 2 years or more if you have any questions in your head.... and of course that is just for HRT. GCS waiting figures vary wildly; but the best seem to be at around 3 years with many at 5 years or more. Yes we can go private, but we don't get an NHS redbait, and our system can still refuse us care after elective/international treatment for any condition.

It just goes to show why there is still so much discussion in support groups/forums about self medication and private treatment in the UK, where healthcare is supposed to be "free". It also shows why for many in the UK, it is still not uncommon for individuals to have completed years of RLE without the support of a clinic or medication.

I should also comment, that the NHS problems are not limited to gender issues, and that while we still have a large number of excellent and dedicated practitioners, the funding issued and excessive spends on admin overheads are crippling the system.


I did find a couple of exceptions worthy of note, one good ...one bad:-  ::)

One case where someone had managed to "buck the system" and talk their local GP into prescribing Estrogen HRT for an extended period, with monitoring, and without a visit to a clinic. On attending CHX for the first time they were worried that the clinic would stop the script, but they didn't (I'm not sure what words were exchanged with the GP though). :)

Oxfordshire PCT (healthcare fund allocation) seems to have a very bad reputation at the moment as they are publically opposing the UK health service directives on gender issue "treatment" funding.   :-\

I'm sure there will be a number of other reports of exceptions, but I believe the above timescales to be realistic as a general overview.

Chrissty
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melanie2009

I know of someone in the UK who was self-medicating, went to the doctor and convinced them to write a prescription. I believe the argument was that it was better and safer than the alternative, that the patient continued self-medication. She now undergoes regular checks. It has to be said that the person in question is quite a determined individual and had really done her homework. So perhaps it is not all that uncommon.

Melanie
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rejennyrated

As someone who back in the early late 70's /early 80's was one of those "exceptions" I am tempted to say "It was ever thus."

It's actually rather sad for me to realise how little things have changed since my day. Although one thing does seem to have improved a little which is monitoring.

I have to say that faced with the prospect of just such a wait I  went private. I had no intention of letting some numbskull 1980's NHS accountant decide my future on the basis of a funding equation, while my life was wasted away in some sort of gender limbo.

But I'm ashamed to say I've only ever seen an endo once in my life and that was because of something unexpected (and actually eventually, after several other investigations, resulted in me being told that I was technically IS). I guess the bottom line is that after 30 years on HRT (a few of the early years of which were erm... unofficial ;) ) I'm still healthy so they probably figure that it isn't worth bothering with monitoring me now.
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Chrissty

Quote from: melanie2009 on January 06, 2010, 08:22:09 AM
I know of someone in the UK who was self-medicating, went to the doctor and convinced them to write a prescription. I believe the argument was that it was better and safer than the alternative, that the patient continued self-medication. She now undergoes regular checks. It has to be said that the person in question is quite a determined individual and had really done her homework. So perhaps it is not all that uncommon.

Melanie

Thanks Melanie, I agree, but under forum rules I have to remind folk reading this that we do not recommend self medicating as it can be very dangerous to many individuals, and you will often not know you are doing damage until it is too late to repair.

Quote from: rejennyrated on January 06, 2010, 11:09:04 AM
....It's actually rather sad for me to realise how little things have changed since my day. Although one thing does seem to have improved a little which is monitoring.

I have to say that faced with the prospect of just such a wait I  went private. I had no intention of letting some numbskull 1980's NHS accountant decide my future on the basis of a funding equation, while my life was wasted away in some sort of gender limbo.....

I probably should have added; that the one thing that appears to have changed is most people reporting the Physiologists to be a lot more polite and professional these days. Some of the adversarial styles adopted in the past make grim reading. The main problem that remains, like you say, seems to be that they seem to do everything with the bare minimum of funding in the NHS, even once you finish "jumping through the hoops and doing the dance".

Counselling is not something everyone will want or need, but I will just mention that for those who feel they do (an I count myself here) the occasional £60 for an hour with a private gender specialist, can be money well spent, even if you just want some insider tips on how to get the most from the NHS, or want to air those pre-op GCS worries.

Chrissty
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Nigella

Hi Chrissty,

Interesting post. May be I am one of those odd ones in that I could have had HRT after six months attendance to my clinic. In the end it was twelve months that I elected to start HRT. Also I have had no difficulty in funding for facial hair removal and genital hair removal. Also breast augmentation is funded but I don't need that. At this point in time I am awaiting funding for my GRS sometime this year. My doctor does not see any reason why the PCT would reject this after a positive second opinion recommending GRS.

Also I was about two months waiting for a clinic appointment from the time of my visit to my doctor. My doctor has also been very supportive and I have found the staff and nursing staff at my surgery very professional and understanding. I appreciate that not all have had such a positive response but I can only say as I find.

From start to finish I hope to have completed my transition within 3 years from start to finish.

There is perhaps two flies in the ointment in that I was not terribly impressed in the counselling that I have received but that may be down to the fact that I have been a counsellor myself through my work. They say nurses make the worst patients, so may be its the same for counsellors. I have since finished with the counselling as in the end I was just not getting anything out of it and felt I did not need it any more. Secondly I believe, female facial surgery should be funded on the NHS as a number of us need that to become accepted in the kind of society that we live.

If I were to give a number out of 10 for the process I have gone through with zero being the worst and ten the best I would give it 7.  The 3 point drop is because of the above two statements.

Stardust
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Chrissty

H Stardust,

I did say the dates were from seeing a GP for the first time, but yes you are still doing well to achieve what you have quoted (but then having read many of your posts here, I'm not all that surprised)..... and I'm sure someone else will ask if I don't, but for the record do you mind saying which PCT it was?

Hair removal seems to be commonly offered, but augmentation funding seems to vary. Most interesting I found was was trachea shaves with vocal chord modification being offered to some.... but yes FFS seems to be generally off the list..

It's shame you never met my counsellor, I'm sure even now she may be able to help answer some of your remaining questions, but I also agree that the need seems to vary with time.

Good luck for 2010...

Chrissty

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Naturally Blonde

Quote from: Chrissty on January 06, 2010, 07:52:55 AM
There have been a number of heated discussions about HRT waiting times for MtF in the UK again, so I thought I would take another look at the more recent reports on UK sites here.

This information is only based on a trawl thorough a few larger sites and looking at more factual reports. I would also comment that the reports I looked at were from transitioners well over the age of 18, and therefore making their own healthcare decisions. I did not look at Scotland, where I understand the situation, and funding to be significantly better than England where I am based.

As expected, most comments were on CHX in London, but then it is still the largest so this is to be expected. Other regional clinics seemed to have less discussion, but overall, similar timescales were discussed.

Starting from scratch with no RLE, the first visits to a gender clinic seem to be 3 to 6 months after initial visits to a GP doctor. This usually also involved a "local" assessment by a local "general" physiologist before referral to the clinic.

Most clinics seem to be operating on around 3 months between assessment, with most not providing HRT letters until after 6 to 9 months (2 or 3rd appointment). The only exceptions seem to be where undisputable documented proof of extended RLE before attendance was provided, or in some cases where extended self medication was involved. I use the word "assessment" rather than therapy, as the session reports seem to be very heavily gatekeeper orientated with little counselling. In a number of cases an extended RLE period before HRT was required.

Most commonly 1 to 3 more months for tests and prescription/letter from a specialist, with treatment normally starting with androgen blockers, and estrogens not added until after a further 3 months or more.


I wasn't able to start on HRT at CX GIC, not even after 2 years of attendance! so in the end I went private for HRT which for me was the best decision I made.  Appointments at CX GIC were every six months, so you were lucky if you got two appointments in one year. Now I think it's improved to every 3 or 4 months.

During my time at CX GIC I didn't receive any counselling or support. The psychiatrists were aggressive and non supportive. At the time I was at an all time low and the negativity shown at this clinic didn't help my self esteem or well being. 
Living in the real world, not a fantasy
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