NHS England has now launched a consultation on adult gender identity services. This runs until 30th September 2017.
Overall, I think there’s a lot of positives in there, and it addresses a lot of the frustrating inconsistencies between clinics. There’s an underlying issue about resourcing and capacity to deliver, but as a statement of what clinics should be aiming to achieve, it’s pretty good.
Here’s my initial thoughts on the positives, and on what could be improved.
- Explicit statement of equity for non-binary people
- Explicit recognition that being trans is not a mental illness and that trans people should have autonomy with regard to gender identity and presentation
- Commitment to meet waiting time standards
- They will consider Skype and phone consultations where possible (hopefully avoiding the current situation where some people make a 4 hour round trip for a 15 min appointment)
- Standardised assessment process, which in most cases is completed in 2 appointments
- Standardising the age limits for service, with extra flexibility on transfers – 17+ go to adult services, <17 are referred to youth services (but can stay there till they’re 20 if appropriate).
- Clear statement that physical exams should not be routinely performed.
- Absolute rejection of conversion therapy
- Everyone now gets a named professional, who is their point of contact., and who checks in with them regularly (can be by email or phone)
- Clear recognition that not everyone will seek interventions in the same linear, sequential process. This could for example make it easier for trans masculine people who want top surgery but not testosterone.
- Clear re-referral process for people who have deferred surgery, then come back to the service for their surgery referral.
- Clear statement that therapy should be available for those who want/need it, but is not mandatory
- Referrals are acknowledged within 14 days, and don’t get rejected for not being in quite the right format
- There’s a clear process for transferring people from one GIC to another, without reassessing them
- Clinics cannot require that family members attend appointments, and if patients refuse a suggestion that family members come along, this cannot affect their care.
- Surgeons have to demonstrate that they are performing at least 20 procedures a year, and that they are engaging with peers, talking to them about outcomes and complications etc (this is aiming to avoid the situation where you get a surgeon doing a small number of procedures which they are not very skilled at).
- Clear standards for what info should be made available at consent to surgery, including offering the patient options and talking about pros and cons.
- Clear statement that if you’re unhappy with surgery and don’t want to be treated by the same surgeon, you have the right to be referred elsewhere.
- Clear statement that if your BMI is over threshold, you should still be referred to the surgeon, and an individual discussion had about risk (also, BMI threshold for top surgery is set at 40 – some clinics had been refusing to refer people for top surgery until their BMI was 30, even though many top surgeons are happy to operate on people in the 30-40 range)
Could be improved
- The big one is that there is currently a dispute between NHS England and the British Medical Association over the role of GPs in prescribing hormones. The document therefore presents 4 options: GP initiates hormones on recommendation of gender clinic (status quo); gender clinic gives 1st prescription and GP continues; gender clinic prescribes for a year then GP continues; or CCG train a specialised GP who does all hormone prescriptions in that area.
– I think the third and fourth options are very problematic. The GICs don’t currently have capacity to do blood tests and administer injections, and it would mean a long journey for patients. In particular, patients on sustanon or enanthate might be having to travel to their gender clinic every three or four weeks for an injection – clearly impractical for someone in full time work living a couple of hours away from their gender clinic.
– A specialised GP sounds great, especially if they could do bridging prescriptions – but I don’t think it’s necessary or sensible to say that they should be the only person who can ever prescribe hormones. There are patients currently in primary care who have been on hormones, managed by their GPs, for several decades. How does it benefit those patients to send them elsewhere in the CCG (possibly a different town) for prescriptions? Plus what happens when that GP is ill, or on maternity leave? Also, the service specification only says what specialised services will do – it can’t place requirements on CCGs. So if the specialised services specification is drawn up expecting CCGs to commission and recruit to these new roles, then what happens if they don’t? The document also makes it clear that the NHS does not know how many trans patients it already has, but it does know the numbers seeking help are increasing. The demand for the new role would therefore be unknown, and rising cumulatively (an unknown number of trans people already taking hormones would all now have to access this service, plus the increasing number of future patients). Realistically, this would be difficult to commission for, and almost certainly experience problems and bottlenecks.
– I would prefer a model which encourages CCGs to have a GP specialist, and for that to be a point of support for other doctors – but which does not say that only that specialist can prescribe.
Edited 26/9/17 to note – On re-reading, it does seem as if they are proposing patients should only use the specialist GP for the first 12 months, then return to their normal GP (though this is not wholly clear in the survey itself, only when you read the more detailed document). However, I still think there are potential problems with bottlenecks, what happens if there is no specialist etc.
- Self-referral would have been nice. It seems to be working okay in Scotland. Although I understand the point about GP buy-in, the GP doesn’t have to be the one who refers the patient anyway.
- The statement that they will not accept referrals of people with acute physical or mental health problems seems too categorical. In practice, waiting lists are currently 12 months or more – it is pretty likely that someone with an acute health problem at the time of referral will have resolved it by the time they get to an appointment. I think it would be better to say that such referrals will be accepted for the waiting list, but the situation reviewed before an appointment is offered
- Specialised services won’t take responsibility for problems with surgery that are not picked up till after 18 months. Unfortunately, some people who’ve had bad surgical outcomes find that very difficult to talk about, and they do come forward some years down the line. In some cases, the surgeon has told them they’re making a fuss over nothing, and it may not be till they speak to others or see photos of others that they realise their result was very poor quality.
- To get a second opinion on surgery that has gone wrong, you have to approach your original surgeon in the first instance and ask them to refer you to someone else. Some people may not want to face the surgeon they’re unhappy with again.
- Edited 26/09/17 to add – In my final submission to this consultation, I gave a very full response regarding hysterectomy referral procedures. At present, NHS England recommends anyone taking testosterone has a hysterectomy after 2-5 years due to risk of malignancy. More recent reviews (e.g. Feldman, 2016; Wesp, 2017) suggest that actually, risk is largely unproven, and NHS England is recommending hysterectomy in situations where other trans health bodies do now. However, for some people, hysterectomy is an important part of addressing gender dysphoria, and/or helps to resolve other gynaecological problems, and therefore access is improtant. It is not a technically specialist operation – most gynae units can do it. However, if hysterectomy is being done because of gender dysphoria, sign off from a gender clinic is required. The new protocol does not specifically require gender clinics to give that sign-off. It also neither confirms nor denies whether NHS England still officially recommends hysterectomies on the basis of risk.