Response to consultation for NHS England's interim specialist gender dysphoria service specification
Sun Dec 4, 2022 · 2032 words · 11 min

Although we are not a health-specific organisation, Trans Safety Network have collectively chosen to submit a response to NHS England's consultation on the interim specification for specialist child and adolescent gender dysphoria services. We did this because we are concerned by the content and the risk of harm to young trans and gender diverse people coming into contact with the service as described in the draft specification.

Some important links relating to the consultation are here:

The following are our responses to the consultation questions:


3. To what extent do you agree with the four substantive changes to the service specification listed in the supporting documents?

Composition of the clinical team

Neither Agree nor Disagree

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Expanding the range of professional expertise available through Multi-Disciplinary Teams is good. However it must be ensured that these newly introduced experts are trained in dealing with trans and gender diverse patients before starting clinical work.

We are concerned that the expansion and persistence of the MDT model may risk lengthening both to the burden of interacting with healthcare professionals for young people, increase strain on underfunded services and reduce overall availability, extending waiting list times. Given that the Cass Review interim report raised significant concerns about the harmful impact of long waits on young prospective gender dysphoria patients waiting on long waiting lists, it is important that the service specification makes adequate provision to address this issue.

It is also important that additional clinical expertise around autism and neurodisability conditions serves the purpose of meeting the needs of patients affected by those issues in a holistic way sensitive to the understanding that some trans people are autistic and some autistic people are trans, and these things are not exclusive of each other.

Clinical leadership

Partially Agree

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We welcome the specification that the clinical lead should be a medical doctor. However this individual should be an expert in care of trans and gender diverse children prior to beginning clinical work, trained in line with recommendations by global expert trans health bodies, such as WPATH.

It should be recognised that while transition related medicine is a medical intervention, the current global consensus has shifted towards depathologisation of transgender identity and gender diversity is not inherently a medical issue.

Collaboration with referrers and local services

Neither Agree nor Disagree

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We applaud the integration with local services. However there must be additional training provided to local services to facilitate this and this must not introduce new insurmountable barriers accessing specialist gender identity related support. In particular it is a common experience for trans patients to struggle to access referrals with unsupportive GPs, and this must not become a new tool for the obstruction of access to healthcare. We are deeply concerned that patients with unsupportive or even simply very busy GPs who do not meet with GIDS will be unable to access services.

There should be a process whereby young people who are considered not to be eligible for the service, can be appeal this decision or have it revised later.

We are also concerned that the draft specification will only provide care to those already currently on the waiting list creating problems for new referrals — new service users are born all the time and old patients on waiting lists age out all the time. This fails to account for the ongoing turnover of patients.

There is a lack of a clear specified timeline for care pathways, in line with existing NHS guidance. GIDS currently fails to provide care in this timeline, and this issue has been raised by the Cass Interim Review.

Referral sources

Disagree

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The draft interim service specification makes clear that non-NHS professional referrals account for only 5% of referrals. It is unclear and there appears to have been no research undertaken into what impact this will have on that 5% of cases and what assessment has been done as to their needs and the reasons for their atypical route to referral. This eliminates a route to accessing healthcare for a minority of young people some of whom will be trans without consideration of the potential issues, entirely on the basis of their atypicality compared with the rest of the patient cohort. This may as a result discriminate against those young people who already have more difficult relationships with local healthcare services, those who are homeless, vulnerably housed, or from travelling communities who do not have settled access to regular local healthcare.

4. To what extent do you agree that the interim service specification provides sufficient clarity about approaches towards social transition?

Disagree

Please expand further:

This part of the service specification is extremely pathologising and attempts to medicalise and control the diversity of gender exploration, expression and identity of young people who come into contact with the service. There is a significant risk that this inappropriate medicalisation of social transition (which specifically encompasses the non-medical aspects of gender expression such as change of name, haircut or clothing which constitute aspects of personal self expression) will pose a threat to the development and exploration of young people’s social identity as well as their human rights.

Children must be free to express themselves and to undertake steps described as social transition as they see fit with appropriate support from families and any health services they interact with.

The fact that some gender diverse children may later desist from gender incongruence before adolescence is not itself an indication that being free to express themselves is harmful. It is natural that understanding of gender for young people develops as they grow and this may entail changes over time. However, the World Professional Association for Transgender Health’s Standards of Care version 8 show this ‘is not sufficient justification to negate or deter social transition for a prepubescent child when it would be beneficial’.

We are concerned that the approach proposed by the service specification may invite attempts by clinicians to reverse the expressed gender identity of trans or gender diverse patients under the mistaken belief that it is harmful — the clear implication of the proposal’s negative and stigmatising claim that because Cass has recommended social transition is viewed as an “active intervention” that this therefore means it should be prevented except in cases of “clinically significant distress” for adolescents, and presumably prevented altogether for children.

We note also that numerous expert health bodies around the world on the topic of transgender health have raised concerns likening the focus in the proposal on “psychosocial” interventions as an alternative to transition to conversion therapy. This would put the interim service specification at odds with NHS England’s commitments under the Memorandum of Understanding on Conversion Therapy.

Furthermore we are alarmed by the reliance on the single piece of evidence given for this entire service specification being drawn from an outdated source inflating “desistance” statistics by falsely conflating gender incongruence with other “deviant” gendered behavior as it was described in the antiquated research from which it was drawn. See: https://growinguptransgender.com/2022/11/02/nhs-service-specification-a-dangerous-attack-on-trans-kids/

5. To what extent do you agree with the approach to the management of patients accessing prescriptions from un-regulated sources?

Disagree

Please expand further:

We are deeply concerned by the conflation in the service specification between “unregulated” sources and private prescriptions or prescriptions which may have been ported from abroad. This is likely to discriminate against young people who have travelled to the UK from foreign countries for instance.

Furthermore it seems likely that the mandatory safeguarding referrals for alternative prescription sources will have an adverse impact on the willingness of young people and their families to engage with NHS gender identity services, especially taking into account the long waiting times currently in place, the severe mental distress many young people with gender dysphoria experience and the likely very high pressures some families will feel under to take alternative routes to alleviate this distress given the existing and long standing lack of access for those on waiting lists. By adopting this hostile stance towards such families, in the absence of solving the issue of timely service provision, it is likely to create additional barriers to safeguarding overall.

We are particularly concerned that young people who are already accessing hormones from unregulated sources may be unwilling to access harm reduction or other NHS services out of fear they could be removed from their parents or guardians.

We note that this concern that this will have an adverse impact on safeguarding young people has been echoed by WPATH and many other global trans health expert bodies in response to the interim service specification.

It is also likely to create wider real harm to the trust between patients, families and the NHS services being provided, due to the increased threat of unnecessary safeguarding referrals without a specifically identifiable harm to the child.

6. Are there any other changes or additions to the interim service specification that should be considered in order to support Phase 1 services to effectively deliver this service?

We are concerned about the mandatory enrolment in research for young people seeking to access “puberty blockers” (GnRHa medication) contrary to well established standards in medical ethics. This seems contrary to wider international expert consensus and the extensive body of existing research on the use of puberty blockers in adolescent transgender patients.

The service specification should be amended to add facilities for fertility preservation.

There is also a lack of any requirement for patients to be involved in future development as the service evolves. The Cass review has already excluded people with service user experience from oversight and it is alarming that this continues the trend of excluding the voice of those most directly affected by service provision from having a voice in how it is delivered.

There is a lack of recognition of difficulties young people can have when it comes to unsupportive adults in roles of responsibility in their life, and protocols for resolving these difficulties centring the rights and healthcare needs of the child, ensuring they have access to appropriate professional support as necessary.

7. To what extent do you agree that the Equality and Health Inequalities Impact Assessment reflects the potential impact on health inequalities which might arise as a result of the proposed changes?

Disagree

The EHIA makes the unproven claim that in most cases gender incongruence does not persist into adolescence, and from this makes a baseless assertion that children accessing the service do not have the characteristic of Gender Reassignment.

A subset of those accessing GIDS will clearly meet the criteria for the Gender Reassignment protected characteristic under the Equality Act — that is what interventions associated with medical transition such as puberty blockers or cross-sex hormones serve to enable. The EHIA fails to recognise that part of this protected characteristic includes those “proposing to undergo” gender reassignment. Consequently the needs and rights of this population must be addressed by the equality impact asssessment.

We are also concerned that while the EHIA recognises evidence that BAME people are underrepresented in those accessing the GIDS service currently and likely to face healthcare discrimination there is no specific recommendation for how to address this issue. The EHIA instead merely asserts that the service specification does not discriminate on the basis of race and ethnicity. This is not an adequate response to acknowledged issues in discriminatory access to service provision, the nature of which has gone unexplored.