NHS England consultation on specialised treatments – gender variant children and adolescents

NHS England has now published its service specification, Gender Identity Development Service (GIDS) for Children and Adolescents (PDF), and policy proposition, Prescribing of Cross-Sex Hormones as part of the Gender Identity Development Service for Children and Adolescents (PDF), following its consultation process. These documents do not adequately meet the needs of gender variant children and adolescents. GIRES summarised these concerns in a presentation to the Mermaids (PPTX, 97KB) seminar that was hosted in London by Lloyds Banking Group on 14 October 2016.

Previous Comments

The comments that GIRES previously made throughout the NHSE consultation process may be viewed below:

NHS England consultation on specialised treatments March to April 2016 – gender variant children and adolescents

Update to section 1.5 in GIRES response to NHS England Consultation on Specialised Treatments April 2016

The phenomenon of co-occurring ASD and gender diversity is well recognised in the UK. There is also research, for instance in The Netherlands, indicating that there is a higher proportion of ASD in the gender diverse population than in the cisgender population. In the general population the prevalence of autism is thought to be about 1%. However, among young people with gender dysphoria 7.8% were diagnosed with autism in the Dutch Clinic (De Vries 2010). In adult Gender Identity Clinics, 5.5% were deemed to be autistic. (Pasterski et al. 2014).

Surprisingly, there have been anecdotal reports of young people who, having been successfully treated for their gender dysphoria, then appear to have no residual ASD characteristics as adults. The symptoms seem to have disappeared completely once the dysphoria has been successfully treated.

Given the understanding of ASD as a persistent characteristic, the only explanation for this outcome is that, in these particular cases, the original diagnosis of ASD was an error. This condition does not disappear, but it may be that certain behavioural indicators in gender dysphoric and ASD groups appear similar in young people, and an assumption is made that ASD is co-occurring.

Even though it is possible, and likely, that social and/or medical transition may help to alleviate some of the difficulties related to autism, there is no evidence that treatment for gender dysphoria, or indeed any other condition, can ‘cure’ ASD.

GIRES’ conclusion:

Whereas there is good evidence that there is a raised incidence of ASD in gender diverse groups, there is no evidence that treatment targeting gender dysphoria, can overcome both gender dysphoria and autism. This confusion appears to arise because, in some young people, an incorrect assumption by clinicians gives rise to a speculative and erroneous diagnosis of ASD in these young people. ASD has not ‘disappeared’ as a result of such treatment; it wasn’t there in the first place. Clinicians working in the field, need to be aware of this possibility. When in doubt, it may be necessary to obtain an opinion from a paediatrician who specialises in ASD/autism. Where ASD is present, extra care must be taken to ensure that ‘informed consent’ for medical interventions is achieved before these are undertaken, without incurring unnecessary delay.

From April 2016:

NHS England has not sent us revised versions of the documents on which we commented so that we could see whether it has amended its approach in response to our concerns. Instead, it has, without further consultation, obtained approval for its approach from the Clinical Priorities Advisory Group (CPAG), which reviews specialised treatments on behalf of NHS England.

We wrote a note to Sir Nick Partridge, Chair of CPAG (PDF, 40KB), with signatures of support from both individuals and organisations, requesting that he consider our concerns regarding NHS England’s proposals for treating gender variant children and adolescents. We do not know what, if any, effect that note had on CPAG’s consideration of the proposals.

NHS England now intends to submit the proposals for final approval to its Specialised Commissioning Oversight Group (SCOG). Only after that will we be allowed to see them. NHSE does not propose to review the proposals until two years after they are published.

One of our key concerns is the arbitrary requirement that all young people must be at least 16 years old before being offered gender affirming medication. Actually, there is no justification for that or any other age requirement. Provision of this medication should be based on physical, psychological and social readiness criteria, excluding age, as well as properly informed consent. We have developed a short note on this subject:

Gender Affirming Hormones for Adolescents – Some Suggestions (PDF, 419KB)