NHS England ‘failing to ensure people with gender dysphoria seen in 18 weeks’

NHS England is unlawfully failing to ensure people with gender dysphoria are seen by specialists within 18 weeks of referral as around 26,000 adults wait for a first appointment, the High Court has been told.

Four people, along with charity Gendered Intelligence and legal campaign group The Good Law Project, are bringing legal action against NHS England over “extreme” waiting times for a first appointment with a specialist.

They argue that the body is failing to meet a duty to ensure that 92% of patients referred for non-urgent care at services commissioned by NHS England – including gender dysphoria clinics – start appropriate treatment within 18 weeks.

They also argue that NHS England is not enabling children and young people who may need puberty-delaying treatment to be seen before their puberty starts or develops – which can lead to permanent or irreversible bodily changes causing “intense anxiety and distress”.

NHS England, which commissions the services for people with gender dysphoria, denies acting unlawfully.

At the start of the hearing on Tuesday, the High Court in London was told that as of August 2022, 26,234 adults were waiting for a first appointment at a gender dysphoria clinic, with 90% of these waiting more than 18 weeks.

David Lock KC, for the claimants, said: “Capacity in the system has never been sufficient to meet the number of patients being referred, let alone deal with the backlog.

“This is an area of service that started in a bad place when NHS England took over in 2013 … it has got consistently worse since and carries on getting worse.”

Mr Justice Chamberlain was told that young people seen at the Tavistock and Portman NHS Trust in May 2022 had waited an average of 152 weeks, almost three years, for a first appointment after being referred.

In written submissions, Mr Lock said that “the same extreme waiting times” are seen in adult services.

One of the claimants, Eva Echo, was referred to the West of England Specialist Gender Dysphoria Clinic in October 2017 but has not yet had a first appointment and has instead spent around £3,000 on private services usually available from the NHS-funded service, the barrister added.

Mr Lock continued that another claimant, Alexander Harvey, was experiencing “extreme distress” due to the delay in accessing treatment.

Mr Harvey, who is transgender, said in evidence that the wait “means that I have to continue to live in a body which I don’t feel is mine and which does not reflect who I am”.

Lawyers for NHS England said the case “takes place against a background of long waiting times for NHS treatment for many patients”.

“NHS England has not sought to deny, and has filed evidence outlining, the scale and complexity of the waiting times challenges facing the NHS,” Eleanor Grey KC, for the body, said in written submissions.

The court was told that by the end of August 2022, around 60.8% of all NHS patients referred for treatment were waiting up to 18 weeks, with 39.2% waiting over 18 weeks.

Ms Grey said that the 92% figure was a “target” duty to make arrangements to ensure, rather than an “absolute obligation”.

The barrister continued in written submissions: “NHS England acknowledges that the 92% target is not being met across the cohort of patients for whom its services are commissioned.

“It will be apparent to the court that the difficulties faced by the NHS in retrieving the position, are pervasive and severe – but also in receipt of the highest level of attention from NHS England’s leadership.”

Ms Grey said there were “complex, multi-factorial reasons” for delays in accessing the gender identity services, including a shortage of specialist staff and that NHS England “has and continues to make strenuous efforts to solve the problems regarding access to gender identity and dysphoria services”.

She later said that gender identity development services for children and young people do not fall under the 18-week target.

The barrister added that a declaration from the court that NHS England was acting unlawfully would be “pointless” but “damaging and corrosive to the health service”.

She continued: “NHS England is already seeking, as an utmost imperative, to reduce waiting times – both across its services as a whole and in relation to gender identity development services.”

Ms Grey said that such a ruling could lead to the Health Secretary lifting the 18-week target.

“The reiteration, by a legal declaration, of a duty of which NHS England is already well aware is overwhelmingly likely to lead to further satellite litigation, further consuming resources,” she said.

The hearing is due to finish on Wednesday with a judgment expected at a later date.