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Two men have launched legal action against NHS England to challenge the NHS service specifications for adult gender clinics.  

The father of an autistic 21 year-old who is booked in to receive genital-removing surgery, together with Ritchie Heron, a detransitioned man who regrets going through the same treatment, are demanding a judicial review and an independent inquiry into the safety of treatment.

A pre-action protocol letter for judicial review has been sent to NHS England, along with the Secretary of State for Health, the Minister for Women and Equalities and Dr Hilary Cass as interested parties.

The letter asks NHS England to expand the terms of reference of the current Cass review to cover all gender identity services commissioned by NHS England for both adults and children, or at the very least up to the age of 25.

The relevant service specifications are:- (a) No. 1719 Gender Identity Services for Adults (Non-Surgical Interventions). (b) No. 1780 Gender Identity Services for Adults (Surgical Interventions).

The claimants are challenging the service specifications on the grounds that:

• There is a lack of safeguards for the vulnerable person who is seeking treatment (often with comorbid conditions including autism),
• the affirmative approach that is adopted towards such persons by the clinical service providers prevents any proper assessment of the underlying condition or exploration of the reasons or co-morbidities which may be the underlying reason why the patient is seeking treatment,
• there are proper grounds for considering that those with ASD (who are over-represented in referrals for Gender Dysphoria treatment) are more likely to be exposed to harm by virtue of their disability and thus victims of indirect discrimination viz. that there is a practice, rule or policy (here a service specification) that is designed to apply to everyone in the same way, but it has a worse effect on those with ASD (or other co-morbid conditions) than others. Indeed it can have the perverse consequence that the persons who are most vulnerable by reason of their co-morbid condition (say ASD) are who need protecting the most, are the ones who are unlikely to obtain the benefit of, for example, psychiatric input.
• There is consequently an avoidable and unnecessarily high risk of irreversible and lifechanging decisions being taken which are later regretted by the person undergoing treatment.

The first claimant seeks judicial review on the lawfulness of the service specification under which his autistic son, with a turbulent mental health history, is being treated for gender dysphoria without being assessed by an autism expert or for the effects of his autism being properly taken into account.

The second claimant, Ritchie Heron, is recently diagnosed with autism and at the time of his genital surgery in 2018 was experiencing significant mental health issues, including depression, OCD, anxiety and severe substance misuse, which were not explored or treated. Instead he was given medical advice that simply affirmed a medical transition pathway.

Whilst he is older than the 25 year old young people category he is concerned that an approach of affirmation and the lack of a multi-disciplinary approach means that young people like him remain at serious risk of exposure to irreversible physical and psychological harm by reason of a service specification that does not protect young adults because the specification (and/or the memorandum under which the treatment is operated) affirms rather than challenges the desire for surgery and fails to mandate multi-disciplinary assessment of the propriety of surgery.

The Claimants consider this lack of therapeutic investigation and exploration of underlying comorbidities, is a direct consequence of the service specifications in their current form.

The claimants’ letter highlights sections of the service specifications as particularly unsafe, including the criteria for genital surgery in the Service Specification Gender Identity Services for Adults (Surgical Interventions), and this statement on ‘conversion therapy’ included in the Service Specification Gender Identity Services for Adults (Non-Surgical Interventions):

“Providers will not deliver, promote or refer individuals to any form of conversion therapy. The practice of conversion therapy is unethical and potentially harmful. For the purposes of this document ’conversion therapy’ is an umbrella term for a therapeutic approach, or any model or individual viewpoint that demonstrates an assumption that any gender identity is inherently preferable to any other, and which attempts to bring about a change of gender identity, or seeks to supress an individual’s expression of gender identity on that basis.”

The claimant’s case is that:

“Neither of the above service specifications mandates psychological or psychiatric assessment or therapeutic intervention prior to the decision to undertake treatment and if such assessment is requested by the patient, by reason of the terms of the definition of the service specification in respect of “conversion therapy” must be given in a way which is required to positively affirm rather the provide any reasonable challenge or questioning of the young person’s beliefs and wishes about their gender.”

And that:

“The consequence is that irreversible lifechanging decisions are made by young persons against a backdrop of:

• Immature development
• Very often, unassessed and unexplored co-morbid conditions such as OCD or ASD and in particular the degree to which such co-morbid conditions are likely to impair long-term decision-making.”

NHS service specifications

We responded to the public consultation on these draft NHS service specifications for adult services in 2017. Our submission, which you can download here as a pdf echoed the grounds of the pre-action letter, including the statement on conversion therapy, which is taken directly from the Memorandum of Understanding on Conversion Therapy to which NHS England is a signatory.

The ideological capture of the NHS, and the pressure these services were under from lobby groups and activists at that time was made clear to us in a public meeting in London in 2017 which we wrote about here.

Adult gender clinics

We have been raising concerns about NHS adult clinics for some time. All vulnerable adults have a right to protection from experimental medical treatment, but our particular concern is the older teen and young adult age group.

Despite the conclusions of the Cass interim report on the Tavistock GIDS, and the scheduled closure of the clinic, NHS England seems to be travelling in an ever more extreme direction with the new adult pilot clinics being set up across the country (see our report here) where older teenagers will be referred. It is incoherent for the NHS to radically restructure children’s services to ensure patient safety, when adolescents will then be referred on to adult services with no such safeguards.

One of the most shocking things about the adult clinics – in common with the Tavistock – is the absence of data collection. A retrospective case note review of patients seen at the Exeter gender identity clinic (GIC) published in 2021 stated:

“to date there has been no requirement for services to collate or report on either access to treatment or outcomes”

and that the frequency of detransitioning could not be quantified due to

“a lack of routine documentation on patient outcomes in terms of physical and psychological improvements from treatment.”

“This is the first retrospective review of consecutively discharged patients from a UK GIC and the first service evaluation to describe the patterns of service use.”

A further parallel with the Tavistock is the high rate of exactly the same range of neurodevelopmental/mental health conditions as noted by the Cass report into the clinic for children. At least one previously diagnosed mental health condition was documented for 72.4% of service users, including:

“110/174 (63.2%) with anxiety and/or depression, 12/174 (6.9%) with personality disorder and 4/174 (2.3%) with a suspected personality disorder, and 7/174 (4%) with an eating disorder. Neurodevelopmental disorders (attention-deficit hyperactivity disorder, autism spectrum conditions, dyslexia or dyspraxia) were diagnosed for 22/173 (12.7%) service users with adequate documentation; these diagnoses were primarily among those under 25 years old (18/86, 20.9%).”

There were three completed suicides in people accessing treatment.

But:

“As the GIC does not itself diagnose concurrent mental or physical health issues, we relied on the documentation of diagnoses made elsewhere, meaning our background characteristics data may be underestimates.”

According to the figures for patients discharged from the clinic over the period 1 September 2017 to 31 August 2018, these were the rates of medical treatments completed:

Female:

Testosterone                                                                                  95.4%

Breast removal                                                                              87.7%

Masculinising gender surgery                                               25.8%

Male:

Oestradiol                                                                                      93.1%

Feminising gender surgery                                                   56.6%

On detransition and regret, the report notes:

“Twelve service users (6.9%) met our case definition of detransitioning. A further six (3.4%) service users had some overlap of experience though they did not strictly meet the case definition.

As data collection occurred for only 16 months after the most recent discharge, we may have underestimated the frequency of detransitioning.

There is some evidence that people detransition on average 4 or 8 years after completion of transition, with regret expressed after 10 years.”

This was from a sample of 175 service users, of which 67 (38%) were females and 108 (62%) were males. The median age was 25 years overall; 36 years for natal males and 20 years for natal females referred between 2010 and 2017.

This age discrepancy fits the picture at the Tavistock: it is overwhelmingly young girls who want to transition – the cohort we know the least about, as Dr Cass pointed out. As the number of adolescents (majority girls) referred to the Tavistock GIDS began to skyrocket around 2015, we would predict that the sex ratio at adult clinics may have changed by now and the age lowered for both sexes.

NHS hosital admission stats

The picture gets worse.

We were surprised to see in the NHS Hospital Admitted Patient Care Activity 2020 -21 report, that age data was not collected for transition-related surgeries. In fact the NHS has not collected data on age for these medical interventions since 2016 – around the time that numbers of adolescents wanting to transition increased dramatically.    

In line with Dr Cass’s findings that we know the least about the new cohort who make up the majority of those wishing to transition, the Exeter clinic report noted:

“The traditional model of care in adult GICs is based on experience with older transwomen, not younger transmen or non-binary service users. There is a need to better understand the specific needs of this new younger generation of service users and shape services accordingly.”

Why would the NHS stop publishing data on this most significant of variables?

There is another anomaly in these patient stats. Almost 97% of the surgeries are for males – although the NHS has recorded 335 Females undertaking Male to Female operations:

Collecting data on the basis of self-ID obscures the most salient variable in this area of medicine: a patient’s sex.

The sex ratio in these stats is confusing given that around 75% of adolescents on the Tavistock pathway are female. It doesn’t tie in with the stats from the Exeter clinic report (38% Female, of whom 87.7% had breast removal surgery and 25.8% had masculinising gender surgery. We would expect all these figures to have risen since 2017).

We checked this against an audit carried out by one GP surgery in South West England, published in 2022. This reflects what we would predict regarding the sex ratio and age of patients.  Sixty-eight patients were identified as trans or gender minority:

“Their mean age was 27.8 years (range 19–89, median 22). Forty-two (62%) were trans men (documented female sex at birth), 22 (32%) trans women (documented male sex at birth), and four were non-binary; three (4%) female and one (1%) male documented sex at birth. Mean age of presentation with gender dysphoria was 20 years (range 12–54, median 18). The mean age of presentation of trans men and non-binary females was 18 years.”

The NHS would not reveal the specific nature of the ‘transformation’ operations so we assume they are what is euphemistically known as ‘bottom surgery’, and double mastectomies are not included. But we don’t know, there is not sufficient information recorded.

(We checked figures elsewhere and found 933 subcutaneous mastectomies recorded for women, outside operations for cancer. This is the type of mastectomy normally performed for gender reassignment, but we have no way of knowing if this was the reason. Young women may also be opting to go private due to waiting lists).

Looking back at historic referrals, the new NHS figures show that there are nearly five times as many gender ‘transformations’ carried out in the NHS as in 2001. The vast majority of these are to remove male genitalia. Is NHS England surgically removing the genitals of increasing numbers of autistic or otherwise troubled young men? Where is the evidence to support this ‘treatment’?

A reminder of the reality of the potential effects of this treatment as experienced by Ritchie Heron:

Despite multiple follow up surgeries, his scar lines still weep, occasionally becoming inflamed and causing crippling pain. In the flesh cavity that was created to mimic a vagina, he feels mostly nothing, aside from the occasional stabs of pain as the nerves try and contemplate the damage, even five years on. He cannot use the toilet properly; the bent urethra has been constricted time and time again, and no matter how hard he pushes or strains, a dribble emerges, which may continue for hours after he has left the toilet.

Evidence-based care?

Given the experimental and life-changing nature of these operations we would expect all adult GICs to be meticulous in their standards of practice, data collection and follow-up so that NHS England can be sure they are not causing patients unnecessary, serious harm. But it seems that the gender affirmation and informed consent model precludes normal standards of care, exactly as revealed by the Cass interim report into the Tavistock.

In the case of the adult clinics, this is about the continuation of a pathway that does not conform to normal medical standards, and the results of this experimental treatment only get worse the further along that path a young person goes. Vulnerable young men and women are having healthy organs removed on the NHS on the basis of their own self-diagnosis of an ‘identity.’

A new study on regret and detransition puts it like this:

“Transition-related medical interventions are now conceptualized as a means of realizing fundamental aspects of personal identity or “embodiment goals” in contrast to conventional medical care, which is pursued with the objective of treating an underlying illness or injury to restore health and functioning”

Ritchie Heron told us that a positive result for him of the legal challenge would be an extension of the Cass independent review into adult gender services. We think this is a matter of urgency.

If you would like to support the father and Ritchie in legal funding for this case, please donate here and share widely. Click on the image below to take you to the fundraising page: