The NHS is currently going all TERFy in the England. The proposed clinical guidance for the new Children and Youth Gender Identity Clinic is, to use a phrase, a hot fucking mess*. The comment period is open and I had some words…
Just in case they’re useful to others, they’re here:
To what extent do you agree with the four substantive changes to the service specification listed in the supporting documents?
a) Composition of the clinical team
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I am deeply concerned that the proposals as written will lead to increasing delays in a treatment system which already fails to meet the 18 week standard for treatment not merely by months but by years. As such, while more expertise could be welcomed, I’m deeply concerned that these proposals will lengthen, not shorten the wait for treatment. Further, that the addition of experts indicated within these proposals will be used to prevent individuals’ access to care rather than working to improve their access. I’m particularly concerned that neurodiverse people may find themselves completely barred from treatment.
Furthermore given the NHS’s lacklustre history of training clinicians in issues that impact the LGBTQIA community, I’m deeply concerned that the experts proposed will lack adequate training to successfully care for transgender and gender diverse individuals. The proposed experts must be adequately trained, and trained using clinical evidence, not the ideological bias that appears to pervade these proposals.
b) Clinical Leadership
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While the proposal that a medically trained doctor is the clinical lead is, in and of itself, not necessarily bad the proposals continue to medicalise the care of, and pathologise the experiences of, transgender and gender diverse people.
This medicalisation bias is very clear through the structure of the proposals despite the WHO and WPATH providing clear evidence that a move away from this old-fashioned, harmful and outdated approach to the care of gender diverse and transgender individuals is necessary. It is therefore vital that any doctor in a clinical leadership role is an expert in the care of transgender and gender diverse children and young people, and that the expertise must include up-to-date knowledge from beyond the boundaries of the United Kingdom.
c) Collaboration with referrers and local services
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While this proposal includes elements that have the potential to be positive – better local service integration and better support to those on the waiting list – there are significant concerning aspects.
– The assumption that people will be on the waiting list for a long period seems baked into this proposal and indicates the complete failure of the NHS to adequately address the elephant in the room – that self-ID with adequately trained GPs providing non-surgical care (access to puberty blockers and as patients demonstrate Gillick competence, hormones), and acting as a point of referral for other treatments would be the more clinically appropriate and financially prudent approach.
– A pre-referral consultation may further delay treatment in a system that is already substantially failing, may place further barriers to access, and may push more people to start treatment without medical care.
– The pre-referral consultation assumes the presence of a supportive GP. There is significant evidence that GPs in the UK lack the training and knowledge to perform this role – and multiple studies have indicated that GPs often act to prevent individuals receiving treatment in contravention of the existing guidelines. For them to fulfill this role will require more training and very clear rules and expectations which have disciplinary force available as recourse for those GPs unwilling to engage.
– The proposals appear to indicate that the new service will not accept new referrals until a large proportion of the existing waiting list has been seen. This leaves many children and young people in an unacceptable state where there is nowhere for them to be referred to (and later sections are coercive about preventing them seeking treatment elsewhere in the interim, a particularly unpleasant catch 22).
– The proposals do not indicate how an individual who has, per their local consultation, ‘not met the access criteria’ would move to obtain a second opinion, lodge an appeal, or whether it is possible for that to occur. This is simply unacceptable.
– Again, this proposal fails to indicate any way in which the service could come into compliance with the 18 week standard.
d) Referral sources
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This guidance is simply inadequate. The implication seems to be that only an individual’s GP or NHS professionals can refer. It does not define who an NHS professional is, and in what capacity it would be appropriate for a non-doctor / nurse practitioner to refer, and in what circumstances those referrals would be accepted. Given the lack of training provided to doctors in the UK on gender related issues, and the lack of support that many transgender and gender diverse youth cite, self referral, or referral through other support networks (teachers, social workers, youth workers) would be appropriate.
Given that many GPs fail to follow the existing guidance for referral, profess a lack of knowledge on how or when to refer, or simply refuse to refer this additional step is particularly concerning.
Furthermore, it continues to build in an unnecessary medicalisation of treatment for transgender and gender diverse children.
To what extent do you agree that the interim service specification provides sufficient clarity about approaches towards social transition?
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This section is completely inappropriate. Social transition is not a medical process and there is simply no possible valid reason for it to be controlled by medical practitioners. The evidence is very, very clear that social transition improves psychological outcomes and reduces suicidality for gender diverse and transgender children and youth. Placing barriers in the way of this is simply unconscionable and speaks to an appalling lack of knowledge or research on the part of the authorial team for this section.
“Watchful Waiting” is an outdated and harmful model that simply exists to improve the comfort of those who oppose evidence based treatment for transgender people. It is espoused by those ideologically opposed to the very existence of transgender people in society and must be removed from future guidance. It is ‘supported’ (and I use that term loosely) in this document using a citation from the Endocrine Society’s guidance which, in turn uses Steensma et al. (2013) as its basis. This study is widely understood to have been based on outdated terminology and assessment and has been superseded by much more up-to-date research that completely undermines the findings of Steensma et al. (2013).
Because it is one of few faintly modern ‘studies’ that supports an anti-transgender / anti-supportive treatment ideology (although, by research standards, it would not make it into most metaanalysis at nearly a decade old), Steensma et al. (2013) seems to find its way into a lot of studies despite its many failings and lack of congruence with modern research findings in the same area.
As a clinician I am appalled that these abhorrently harmful practices are being suggested by the NHS and urge that the following (rather more modern) research and guidelines are included in a complete and thorough rewrite of at the very least this section (although frankly, a rewrite of the entire proposal would be more appropriate):
– Durwood et al. “Mental Health and Self-Worth in Socially Transitioned Transgender Youth.” Child & Adolescent Psychiatry, 2017, https://doi.org/10.1016/j.jaac.2016.10.016
– Durwood et al. “Social support and internalizing psychopathology in transgender youth.” Journal of Youth and Adolescence, 2021, https:// doi.org/10.1007/s10964-020-01391-y
– Olson et al. “Mental health of transgender children who are supported in their identities.” Pediatrics, 2016, https://doi.org/10.1542/peds.2015-3223
– Olson, K. R., Gülgöz, S., 2018. “Early findings from the TransYouth Project: Gender development in transgender children.” Child Development Perspectives, 2018, 12, 93–97. https://doi.org/10.1111/cdep.12268
– Gibson, D. J., Glazier, J. J., Olson, K. R. “Evaluation of anxiety and depression in a community sample of transgender youth.” JAMA Network Open, 2021, 4, e214739.
– World Professional Association for Transgender Health. “Standards of Care for the Health of Transgender and Gender Diverse People, Version 8.” International Journal of Transgender Health, 2022, p. S75. https://doi.org/10.1080/26895269.2022.2100644.
– World Professional Association for Transgender Health. “Standards of Care for the Health of Transgender and Gender Diverse People, Version 8.” International Journal of Transgender Health, 2022, p. S53. https://doi.org/10.1080/26895269.2022.2100644.
– Memorandum of Understanding group. “Memorandum of Understanding on Conversion Therapy in the UK (Version 2).” BACP, 1 Mar. 2022, www.bacp.co.uk/media/14985/memorandum-of-understanding-on-conversion-therapy-in-the-uk-march-2022.pdf.
– Ehrensaft et al. “Prepubertal social gender transitions: What we know; what we can learn—A view from a gender affirmative lens.” International Journal of Transgenderism, 2018, 19(2), 251–268. https://doi.org/10.1080/15532739.2017.1414649
To what extent do you agree with the approach to the management of patients accessing prescriptions from un-regulated sources?
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This section seems to be unclear on the difference between “unregulated” and “private practice providers”. Private healthcare providers are a legal and appropriate means of providing healthcare, whether based in the UK or elsewhere. Given the NHS’s woeful inability to meet the 18 week standard, and this proposal’s abrogation of any attempt to do so, it is an absolute farce to suggest that individuals effectively denied treatment by a system that – in this reworking will obviously continue to fail – should not seek treatment elsewhere in the interim.
Worse, this proposal suggests that those providers outside the NHS who actually are providing a standard of care concordant with current international guidelines should be subject to safeguarding referrals. This is simply unacceptable.
1) Accessing treatment regardless of its source MUST NOT be a safeguarding concern
2) Accessing treatment regardless of its source MUST NOT be a barrier to receiving NHS treatment at a later date.
3) The NHS absolutely should provide a safe transition to medically supervised medication prescription and management for those individuals who’ve sought treatment from sources outside traditional heathcare (mainly, I suspect, teens who’ve been failed by the NHS so far and in desperation have obtained tablets from friends or ‘off the internet’).
This proposal as a whole, as has been repeatedly pointed out will fail to bring the NHS into line with its own standard and requirements. It will not make the NHS meet its 18 week timeline for treatment, and will fail to do so because it is designed to fail to do so.
The Coercive nature of this particular service specification is likely to be felt as a threat with a punishment, furthermore, it will contradict Domain 5 of the NHS outcomes as it is likely to prevent families seeking other support from their GPs. It is, simply put, unethical.
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?
Please expand further:
For reasons that are not explained, this proposal suggests the use of GnRHa blockers is experimental. It’s not; it’s well documented both in the care of transgender and gender diverse youth (see WPATH’s “Standards of
Care for the Health of Transgender and Gender Diverse People, Version
8.” International Journal of Transgender Health, 2022, p. S64, S123.
https://doi.org/10.1080/26895269.2022.2100644″) but also for youth with a number of other healthcare conditions. In those conditions it’s considered safe, but for some reason this document ignores that large evidence base.
This proposal also ties GnRHa blockers to an unethical requirement to be enrolled in a research program. Best practice guidelines require that any provision of (transgender) healthcare is also available in a manner that is ‘explicitly independent of research participation’, as informed consent must be ‘without coercion or undue influence’.
Therefore, this section needs to be clarified to indicate that:
– GnRHa blockers are an appropriate and safe treatment.
– No research program participation is required for their prescription.
It also needs revision to include the following:
– To reference and recommend referrals to local endocrine services and fertility preservation services
– To clarify prescribing responsibility for cross sex hormones (and again, this should be the GP following self ID at a point of Gillick competency)
– To clarify how and when reviews of this system will occur
– To acknowledge that not all families / carers will be supportive, and that a lack of support is is correlated with worse outcomes for transgender and gender diverse children and youths.
– To acknowledge that in a situation where a child is not Gillick competent, but continues to express a gender diverse or transgender identity, and the family are not supportive, GnRHa blockers may be appropriate to allow the child time to reach Gillick competency without undergoing a potentially traumatic and avoidable puberty, regardless of parental or guardian’s support.
– There is no reference to patient and public involvement in service development. This is contrary to pretty much every part of the modern NHS’s development and must be rectified.
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?
Please expand further:
To put it at its most simple, the EHIIA does not reflect potential impacts on health inequalities.
It is a disingenuous section which is predicated on this statement:
“The interim service specification sets out more clearly that the clinical approach in regard to pre-pubertal children will reflect evidence that in most cases gender incongruence does not persist into adolescence”
As I’ve pointed out in previous answers this is simply based on outdated and incorrect information. It reflects a seemingly wilful lack of research or desire to listen to those with expertise and instead places an ideological bias that is not supported by current research at the center of NHS proposals. This will lead to clear and avoidable harms which this section then go to great lengths to excuse by denying that those seeking treatment for GIDS would be covered under the 2010 Equality Act’s protected characteristic of “gender reassignment”.
The authors of this proposal seem unwilling to read the current massive body of literature which indicates that gender affirming treatment is vital, that the very small percentage of people who desist in seeking gender affirming treatment often do so because of negative and harmful experiences from family, society, or medical providers, and often seek treatment again later when they are in a more supportive environment. And so the authors of this proposal appear to be using just the 2013 ‘study’ as a crutch to instead support something that will instead open the NHS up to repeated legal challenges.
It is clear that even despite the NHS denying and delaying treatment, these individuals will still meet the protected characteristic requirement.
The EHIIA must account for how this ‘interim service’ will avoid discrimination in access to care for this subpopulation of children and young people, and in particular those from BAME groups (which evidence suggests are more likely to be the subject of discrimination), those with disabilities, and those who have families who are unsupportive.
I note the EHIIA also states that the NHS has not (bothered?) to consult with anyone about how to reduce inequalities. This is another abject failure in these proposals.
* We are not going to get into the fact that GICs are an outdated concept from another era here. Watch this for some why.