NHS England ends the use of puberty blockers

NHS England

On Tuesday March 12th NHS England confirmed that puberty blockers will no longer be available as routine treatment for children experiencing gender-related distress.

We welcome this confirmation of the draft policy following public consultation. We are especially pleased that NHS England has scrapped the inclusion of ‘exceptional cases’ as this would be unworkable in practice. In our response to the consultation we said:

“There should be no exceptional cases outside the trial – these cases would be lost to the research and there is no justifiable reason to exclude some children from the study.”

Instead, a child’s clinician will have to apply under NHSE’s ‘Individual Funding Request’ process and would need to demonstrate why they believed the case was exceptional and ‘why a treatment that is not routinely commissioned by the NHS is an appropriate treatment option.’

NHS England have also said its decision to end prescribing is ‘not contingent upon the establishment of a clinical study.’ If the proposed study does not get ethical approval, puberty blockers will remain unavailable on the NHS.

We do not think such a study should gain ethical approval before the establishment of an evidence-base which shows that puberty blockers are a safe treatment for children at the time of natural puberty. Currently we do not have that evidence. A clinical trial for the purpose of advancing medicine when risks are both known and unknown is unethical especially for a vulnerable population such as children.

As we pointed out in our response to the consultation, there is no indication or estimate of the numbers of children who will be eligible for the trial. The authors of the GIDS Early Intervention trial study conceded that the sample size (44) was too small to detect significant changes. Achieving a large sample size for the purposes of research is not an ethical reason for enrolling children onto the trial. This presents a conflict between best interests of children (low numbers) and best case for research (high numbers). If it is to be a ‘last resort’ treatment for very few children it is critical to know what the criteria are for those judged eligible.

We are also concerned that cross-sex hormones will still be offered to children from age 16. The interim clinical policy states that the prescribing of cross-sex hormones is covered by a separate clinical policy:

“If the proposal is adopted by NHS England following stakeholder testing and public consultation, it would be appropriate to make a consequential change to the related clinical policy for prescribing cross-sex hormones for young people with gender dysphoria by removing the requirement for a young person to have been receiving puberty supressing hormones for a defined period of time.”

We wrote to NHS England asking if there would be a public consultation on the clinical policy for cross-sex hormones but received no answer.

This suggests that the new service would continue to offer cross-sex hormones at around age 16, while missing out the former puberty blockers stage. For boys, blockers are used in conjunction with oestrogen, to suppress testosterone, and this use will continue according to the NHS Equality and Health Inequalities Impact Assessment (EHIA):

“The use of an anti-androgen will continue to be available for this purpose in natal males, not before middle adolescence, who are prescribed Gender Affirming Hormones from around 16 years of age and for natal males who are aged 17 years and above who are seen by adult Gender Dysphoria Clinics.”   

This is our concern: that while much attention has been given to the subject of puberty blockers, the use of cross-sex hormones seems to have been given a free pass.

This is a medical intervention that was previously only available at adult clinics. Prior to 2011 children were offered puberty blockers at age 16, and the child and adolescent clinic did not prescribe cross-sex hormones at all. Even so concerns were being raised, notably by Sue Evans in 2005 leading to the David Taylor report, which was subsequently buried for fifteen years.

NHS England has reviewed the use of blockers on the basis of the Cass Review and the NICE systematic review and changed policy. The NICE systematic review of cross-sex hormones found exactly the same result as for blockers: that the evidence is of very low certainty. The NICE review states:

“Further studies with a longer follow-up are needed to determine the long-term effect of gender-affirming hormones for children and adolescents with gender dysphoria.”

Unlike in the case of blockers, the irreversible effects of cross-sex hormones have long been widely acknowledged. With such life-changing effects, why are we yet to see an amended policy?

Only children with ‘early-onset’ gender dysphoria will be eligible for a puberty blocker clinical trial. This excludes the adolescents experiencing rapid onset gender dysphoria beginning at or after the start of puberty, the group we know the least about. This is good because this is the cohort most susceptible to online influence and social contagion. But will they simply be enabled to progress direct to cross-sex hormones instead? This would be a worse outcome for the rapid onset group, given the significant known effects of hormones.  

Before we start celebrating we want to see a new NHS England draft clinical policy for cross-sex hormones, including a public consultation. There has been a consultation on the overall service specification (which we responded to here), the consultation on puberty blockers and an ongoing consultation on referral pathways, open until March 20th. But there has, as yet, been no amended clinical commissioning policy for cross-sex hormones.

Ending the use of puberty blockers is a welcome first step, but it is not enough to protect children and young people like Keira Bell. Until we see an amended policy for cross-sex hormones and an equivalent Cass review of adult services, adolescents and young adults will still be at risk of undergoing experimental medical interventions they do not need and may live to regret.  

This Post Has 2 Comments

  1. imogen makepeace

    Thank you for this clear evaluation of the news.
    The change in NHS guidance on puberty blockers gives us opportunity to take the conversation wider.

  2. Dawna

    Keep going 👍🏼

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