The Opinion: The Interim Report
This is the second part of a series. To find the first part, go here.
Having framed the Op Ed with the claim that NZ media was ignoring the international developments in the “care and treatment being provided for children and teenagers identifying as transgender or non-binary…”, and followed that with the dubious claim that 1,000 families were expected to take legal action against the Tavistock GIDS clinic, we finally get down to the detail.
The Cass Review was announced in September 2020, a few months before the initial (and since overturned) decision in Bell v Tavistock. It was widely supported by the LGBT community, as Dr Cass said;
“It is absolutely right that children and young people, who may be dealing with a complexity of issues around their gender identity, get the best possible support and expertise throughout their care.
“This will be an inclusive process in which everyone will have the opportunity to make their views known. In particular, I am looking forward to hearing from young people and their families to understand their experiences.”
The interim report was delivered in March of 2022 and produced fourteen items of interim advice. Among this was that the Tavistock GIDS, which had evolved as a single service provider for trans and gender healthcare, be replaced with first two, and then more, regional services.
Cass did find that the service model for GIDS was not able to provide safe care, with a specific focus on how oversubscribed they were — and the negative results that long waiting times had on patients and their parents’ first engagement with GIDS.
The closure of GIDS was welcomed by families of patients, who recognised the service was not able to meet their needs — but did not have any other service they could access. They are hoping for more equitable access to healthcare, as is Dr Cass.
It’s true that then health-secretary Sajid Javid had ‘allies’ make statements to the press about ‘launching an urgent inquiry into the long term effects of gender dysphoria treatment’ at the time, but this urgent inquiry did not actually occur because — and I’m not sure how to put this without sounding way too sarcastic — that inquiry was already undergoing, and it was called the Cass Review.
Here’s the Cass Interim Advice, point by point. Pages 20–24.
1: The Review advises that the regional centres should be developed, as soon as feasibly possible, to become direct service providers, assessing and treating children and young people who may need specialist care, as part of a wider pathway. The Review team will work with NHS England and stakeholders to further define the proposed model and workforce implications.
2: Each regional centre will need to develop links and work collaboratively with a range of local services within their geography to ensure that appropriate clinical, psychological and social support is made available to children and young people who are in early stages of experiencing gender distress.
3: Clear criteria will be needed for referral to services along the pathway from primary to tertiary care so that gender-questioning children and young people who seek help from the NHS have equitable access to services.
4: Regional training programmes should be run for clinical practitioners at all levels, alongside the online training modules developed by Health Education England (HEE). In the longer-term, clearer mapping of the required workforce, and a series of competency frameworks will need to be developed in collaboration with relevant professional organisations.
5: The regional services should have regular co-ordinated national provider meetings and operate to shared standards and operating procedures with a view to establishing a formal learning health system.
6: Existing and future services should have standardised data collection in order to audit standards and inform understanding of the epidemiology, assessment and treatment of this group of children and young people.
7: Prospective consent of children and young people should be sought for their data to be used for continuous service development, to track outcomes, and for research purposes. Within this model, children and young people put on hormone treatment should be formally followed up into adult services, ideally as part of an agreed research protocol, to improve outcome data.
8: There needs to be agreement and guidance about the appropriate clinical assessment processes that should take place at primary, secondary and tertiary level.
9: Assessments should be respectful of the experience of the child or young person and be developmentally informed. Clinicians should remain open and explore the patient’s experience and the range of support and treatment options that may best address their needs, including any specific needs of neurodiverse children and young people.
10: Any child or young person being considered for hormone treatment should have a formal diagnosis and formulation, which addresses the full range of factors affecting their physical, mental, developmental and psychosocial well-being. This formulation should then inform what options for support and intervention might be helpful for that child or young person.
11: Currently paediatric endocrinologists have sole responsibility for treatment, but where a life-changing intervention is given there should also be additional medical responsibility for the differential diagnosis leading up to the treatment decision.
12: Paediatric endocrinologists should become active partners in the decision-making process leading up to referral for hormone treatment by participating in the multidisciplinary team meeting where children being considered for hormone treatment are discussed.
13: Within clinical notes, the stated purpose of puberty blockers as explained to the child or young person and parent should be made clear. There should be clear documentation of what information has been provided to each child or young person on likely outcomes and side effects of all hormone treatments, as well as uncertainties about longer-term outcomes.
14: In the immediate term the MultiProfessional Review Group (MPRG) established by NHS England should continue to review cases being referred by GIDS to endocrine services.
From the Op-Ed;
A key concern relates to significant gaps in the evidence base on the safe use of puberty blockers for children and teenagers.
Except, if you look at the interim advice above, not really. The only mention of puberty blockers in Cass’ advice was to ensure practitioners clearly document the information provided to allow informed consent, and that cases should be reviewed if they are referred. If you recall from the GIDS statement, 19,000 patients were referred to GIDS in the last decade and just 1,000 of those were referred to an endocrinologist.
In fact, Cass itself says;
1.5. The Review is not able to provide definitive advice on the use of puberty blockers and feminising/masculinising hormones at this stage, due to gaps in the evidence base; however, recommendations will be developed as our research programme progresses.
Does this constitute a key concern? Cass has clearly stated that further research must be done, and that will take the form of a literature review and the establishment of better data collection and sharing with patient consent under the newly established multiple services. In further advice, Dr. Cass also said that the research element was important because;
Without an established research strategy and infrastructure, the outstanding questions will remain unanswered and the evidence gap will continue to be filled with polarised opinion and conjecture, which does little to help the children and young people, and their families and carers, who need support and information on which to make decisions.
Dr. Donovan’s article also says;
The UK’s Cass report also found that almost all children and young people prescribed puberty blockers then subsequently go on to cross-sex hormones (96.5 percent and 98 percent respectively).
This isn’t a Cass finding, but rather the evidence from a Netherlands study and a GIDS study into teenagers being prescribed puberty blockers.
But what Dr. Donovan employed these statistics for was to highlight a difference between the NHS’s wording on puberty blockers;
Little is known about the long-term side effects of hormone or puberty blockers in children with gender dysphoria. Although the Gender Identity Development Service advises this is a physically reversible treatment if stopped, it is not known what the psychological effects may be. It’s also not known whether hormone blockers affect the development of the teenage brain or children’s bones.
And the Ministry of Health NZ’s wording:
Blockers are a safe and fully reversible medicine that may be used from early puberty through to later adolescence to help ease distress and allow time to fully explore gender health options.
Which has since been amended, in September 2022, to;
Blockers are sometimes used from early puberty through to later adolescence to allow time to fully explore gender health options. This is done under the guidance of a clinician who specialises in their use.
Donovan points to this data as concerning as it implies puberty blockers are not ‘safe and reversible’, without consideration that to be prescribed puberty blockers patients must go through assessments indicating their need.
Think again of the 1,000 of 19,000 patients who were referred to an endocrinologist from Tavistock GIDS. Of them, a high proportion later chose to take hormone treatments. But what of the other patients who weren’t referred to an endocrinologist for puberty blockers? They wouldn’t be considered in a study of the use of puberty blockers, but would still have accessed Tavistock GIDS and resolved their gender identity issues another way.
The MoH still maintains they are reversible and safe, by the way.
How does the New Zealand model of child and teen gender services compare with the NHS model now being urgently overhauled? What a great piece of local investigative journalism that would make.
I find it utterly fascinating that a Doctor in public health policy would end their Op-Ed with this statement, having referred to just one MoH webpage in their discussion of NZ’s gender and trans healthcare. Because the information about the NZ model is out there, a few clicks beyond the MoH page she visited. I’ll cover that next.
Hey, I’m a cis guy writing about this stuff. If you want to read great trans authors also talking about these issues — I’m going to link to one at the end of each of this series’ entries.
Katy Montgomerie is an LGBT+ advocate who also streams on YouTube and can be found: https://katymontgomerie.com/