Puberty supressing hormones will no longer be routinely offered as a treatment for gender dysphoria in children and adolescents according to new NHS England Clinical Policy.
On 9 January 2024, NHS England issued an interim clinical policy on the routine prescription of puberty supressing hormones or puberty blockers to children and young people with gender dysphoria or incongruence. The decision comes after a review found there was not enough evidence the drugs were effective or safe.
Puberty blockers to be limited to clinical trials
Children will no longer be routinely prescribed puberty supressing hormones at gender identity clinics. They will now only be available as part of clinical research.
In January 2020, NHS England commissioned the National Institute for Health and Care Excellence (NICE) to review the published evidence on the use of puberty blockers.
NICE found that overall, for children and adolescents treated with puberty blockers, there was no significant difference in:
- gender incongruence
- mental health
- body image
- psychosocial functioning
The quality of the evidence was assessed as very low certainty, with limited short-term and long-term safety data available.
‘Evidence-based decision’
NHS England’s Clinical Effectiveness Team considered follow up literature of nine further studies along with the recommendations of the interim report by Dr Hilary Cass. Having carefully considered the evidence NHS England “concluded that there is not enough evidence to support the safety or clinical effectiveness of puberty supressing hormones to make the treatment routinely available at this time.”
How do puberty blockers work?
Puberty suppressing hormones work by pausing or delaying the development of secondary sex characteristics during puberty. This includes:
- limiting breast development
- stopping menstruation
- slowing the growth of facial and body hair
- voice deepening
- the growth of male reproductive organs.
As the treatment has not been banned, if treatment by puberty blockers is already underway then patients will continue to receive the treatment. New prescriptions for the treatment will not be available. Young people will only be able to access the treatment if taking part in a clinical trial.
‘A different service model needed’
The new policy follows Dr Hilary Cass’s interim report in February 2022. The report found that it was not possible to accurately track the outcomes and pathways that young people take through the service. There was a lack of long-term data from the Gender Identity Development Service (GIDS) on the treatment outcomes for young people treated by puberty supressing hormones.
The interim report also found that “a fundamentally different service model [was] needed which is more in line with other paediatric provision”. This would provide timely and appropriate care for children and young people needing support around their gender identity.
Concerns over future care
However, BBC News has reported that staff at the Nottinghamshire Healthcare NHS Foundation Trust are concerned that the new service, due to launch in April 2024, will not be fully operational by this time.
Several sources told the BBC they had been asking NHS England for months to help set up channels of communication between the teams to assist with a smooth handover.
Those receiving care have also said they are worried about their future care and feel as though they have been left ‘in the dark’ over the continuity of their treatment.
An NHS England spokesperson said: “Patients will see continuity of care when the new services come online from April, and all patients waiting will be offered a local mental health assessment if they want it, with extra national resource provided to ensure the best possible support.”
GIDS at the Tavistock Clinic is due to close in late March. It is set to be replaced by two regional NHS services at Great Ormond Street Hospital and Alder Hey Children’s Hospital. It is anticipated that more regional centres will be set up in due course.
Pogust Goodhead comment
“If implemented properly, the creation of new regional centres offering gender dysphoria diagnosis and treatment is a welcome development. However, continuity of care is essential to ensure patients receive the best treatment. We also hope that this change in clinical approach, with the added benefit of clinical trial data, will pave the way for young people experiencing gender dysphoria to benefit from treatments that are safe and supported by robust clinical evidence. I would echo Dr Hilary Cass’ comment that ‘children and young people with gender incongruence or dysphoria must receive the same standards of clinical care, assessment and treatment as every other child or young person accessing health services.” – Lisa Lunt, Partner, Pogust Goodhead
Pogust Goodhead is instructed to pursue clinical negligence claims in relation to gender dysphoria treatments at GIDS and other treatment providers in the UK. Find out more here.
