The small number of clinicians involved in providing some specialised services can lead to a conflict of interest, a patient group has warned.
The Gender Identity Research and Education Society, which shares concerns about the lack of patient engagement in the development of specifications for specialised services, claims there is an “inherent conflict of interest in having clinicians write their own service specifications”.
Gender dysphoria services, which range from initial counselling and hormone therapy to transition surgery, are provided at just seven centres around the country. A handful of surgeons carry out transition surgery.
Society trustee Terry Reed told HSJ patients and stakeholders had been under-represented on clinical reference groups and the practice of holding meetings by conference call rather than face to face had made it more difficult for those involved to get their voices heard.
The society claims patient voice has been ignored on the issue of “challenge”, a concept in gender dysphoria care that requires clinicians to challenge individuals if they are not living as their identified gender full time while waiting for treatment. In practice the society claims this leads to patients feeling pressured to make life changes they may not be ready for.
The gender dysphoria specifications use guidance from the World Professional Association for Transgender Health which has been superseded by a newer version that has been in the public domain since 2011.
Mrs Reed said this had not been updated despite the society pointing it out on a number of occasions.
She added: “Commissioners are not experts but they give too much weight to clinicians and not enough to patients.”
The specification has flagged up as a footnote the release of new guidance which it says the commissioning board must look at at “the earliest opportunity”.
National Voices director of policy Don Redding said the potentially insular nature of some specialised services meant it was important specifications were properly scrutinised.
He said: “What you’re talking about is a very small world of clinicians, often consultants, who specialise in that particular type of treatment and they tend to know each other and either get on or don’t get on.
“For these reasons it will be important that transitional arrangements are replaced with something that can satisfy all sides as being best practice.”