Children and young people ‘let down by unevidenced NHS gender care’

Children and young people seeking NHS care for gender-related distress have been let down by the ‘remarkably weak evidence base’ and an increasingly toxic public debate, the final Cass review has concluded.

In a detailed analysis of NHS gender services for those under the age of 18 years, paediatrician Dr Hilary Cass called for a more ‘holistic and personal’ approach with gender services matching the standards of care and research expected from other parts of the NHS.

The report concluded no clinician should be expected to prescribe outside their competence and that GPs should not be expected to enter into a shared care arrangement with a private provider, ‘particularly if that private provider is acting outside NHS guidance’.

The review was not about undermining the validity of trans identities but about determining the right healthcare approach for the growing number of children and young people looking for support with gender identity, Dr Cass said.

As part of the review, GPs had raised concerns about being pressurised to prescribe hormone treatments initiated by private providers.

The review concluded that for most young people, a medical pathway may not be the best way to manage their gender-related distress.

Where it is clinically indicated, it is not enough to provide this without also addressing wider mental health and psychosocially challenging problems, it said.

Among its 32 recommendations, the report also sets out a clear structure for referral with all patients accessing specialist regional hubs through secondary care only.

GPs should do an initial consultation and assessment as they would with any other young person before referring to child and adolescent mental health services or paediatric services in the first instance, the report said.

An audit of GIDS discharge notes done in 2023 found that almost 41% of patients had been directly referred to the service by their GP.

NHS England announced in March that children with gender dysphoria will no longer be treated with puberty blockers because there was not enough evidence to support their safety or clinical effectiveness.

In addition to a recommended NHS trial of puberty blockers, there should also be a ‘full programme of research’ looking at characteristics, interventions, and outcomes of every young person presenting to NHS gender services, Dr Cass said.

The review was commissioned in 2020 after concerns were raised about the care offered at the Gender Identity and Development Services (GIDS) at the Tavistock and Portman NHS Foundation Trust and a sharp increase in the number of children and young people being referred.

The Tavistock clinic closed last month with two new regional hubs opening in Liverpool and London after an interim report recommended moving away from a single service model. NHS England has said there are up to eight regional centres being planned.

Yet a lack of evidence and follow-up data on both hormone treatments and psychosocial interventions has left ‘a major gap in our knowledge’ about how best to support these children and young people, Dr Cass said in the final report.

There is also a need to better understand the large increase in referrals to GIDS in the past decade and why it has ‘disproportionately been seen in birth registered females presenting in adolescence’, she added.

Dr Cass told the BBC Radio 4 Today programme that healthcare professionals had been afraid to openly discuss their views.

‘What’s unfortunately happened for these young people is that because of the toxicity of the debate, they’ve often been bypassed by local services who’ve been really nervous about seeing them,’ she said.

‘So rather than doing the things that they would do for other young people with depression, or anxiety, or perhaps undiagnosed autistic spectrum disorder, they’ve tended to pass them straight on to the GID service.’

There is also a need for all clinicians to receive better training so that ‘all clinical staff can support them in a range of settings across the NHS’, the review said.

Health secretary Victoria Atkins said services needed to be based on the very best available evidence and expert clinical opinion.

‘I will be working closely with NHSE to implement further changes as soon as possible to ensure that the support given to children and young people is caring and careful.’

An NHS spokesperson said significant progress had already been made towards establishing a fundamentally different gender service for children and young people and a full implementation plan would be published following careful consideration of the final report.

‘The NHS is also bringing forward its systemic review of adult gender services and has written to local NHS leaders to ask them to pause offering first appointments at adult gender clinics to young people below their 18th birthday.’

RCGP chair Professor Kamila Hawthorne said the review has provided ‘welcome clarification’ of the role and responsibilities of GPs in the care of gender questioning children.  

She said: ‘The review emphasises the importance of evidence-based, holistic care, and we welcome calls to expand capacity in secondary care, where the specialist care required is best able to be provided, in order to offer more personalised care for transgender and gender questioning children and young people. 

‘The care of transgender and gender questioning people is a complex area of medicine and the RCGP has members with a range of views on the issue. The college has a policy position agreed by our council. We are now in the process of updating this to reflect any factual changes required in the light of the Cass Review.’

Professor Azeem Majeed, a GP and professor of primary care and public health at Imperial College London said having a clear referral pathway, if done properly, could take pressure off GPs as well as helping patients.

‘It would though require a relatively simple referral pathway that did not require GPs to collect large amounts of information and carry out numerous tests before referral, with the bulk of this work being undertaken by specialist services and patients assessed quickly.

But this approach could also lead to lengthy delays before patients are assessed leaving them in between primary care and specialist services for a long period.

‘We already have waiting lists of three years and over for services for ADHD assessment and we need to avoid this for patients with gender-related issues.’

Last year, an LMC advised GP practices that they can refuse requests to take on hormone prescribing responsibilities from private clinics for transgender patients due to a lack of resources.