Delays, rows and legal challenges: inside the stalled new NHS gender identity service | Gender

When NHS England announced the closure of the gender identity development service (Gids) for children at the Tavistock clinic in July 2022, officials were clear about what would come next.

They said the unit would shut in the spring of 2023, when it would be replaced by two fully operational preliminary regional hubs, in London and Liverpool, which would have a different approach to treating patients.

Parents who expressed concern about a potential gap in service provision were assured there would be a smooth transition and overall services would be expanded.

Just over a year later, the reverse has proven to be the case.

An analysis by the Guardian reveals how chaotic the situation has become.

The opening of the hubs has been delayed by more than a year amid difficulties in recruiting staff, and tensions over how to train employees in caring for young people with gender dysphoria. Meanwhile, the waiting list of young people seeking help has grown to more than 7,000.

As delays to the openings continue, NHS England (NHSE) has started to shift thousands of 17-year-olds, and 16-year-olds who turn 17 before next March, on to the adult waiting list, where they are likely to receive a different, less exploratory form of treatment.

This development so concerned the mothers of two 17-year-olds that they launched a judicial review challenging the stark disparities between the child and adult services.

To complicate matters further, an NHS consultation designed to gather views on how best to support children with gender dysphoria has identified two irreconcilable outlooks on the best approach: one group is cautious about the prescription of puberty blockers, while the second is suspicious of exploratory therapy, arguing that it could enter the realm of conversion practices.

Tensions have also emerged in the small team charged with developing teaching materials for staff at the new clinics. There are polarised views on how quickly patients with gender dysphoria should be assisted towards social and medical transition, and how much focus should be given to other issues present in their lives, such as trauma and homophobic bullying.

Soaring demand – and a new approach

On such a sensitive subject, and at a time when NHSE’s approach to treating children with gender dysphoria is being fundamentally rebuilt, perhaps it is not surprising that so many difficulties have emerged.

Officials acknowledge that the complexities of designing and commissioning the new service model, and recruiting and training a new clinical workforce, have led to timetable “revisions”. The scheduled disbanding of the Tavistock Gids has twice been pushed back by six months. The first pilot service was due to open later this month (a partnership between Great Ormond Street, the Evelina Children’s hospital and South London and Maudsley NHS trust) with a skeleton staff of 12 clinicians and an initial caseload of just a dozen families. However, officials now say the service is not yet ready for patients and staff are working to an April deadline.

The rationale for closure was that the Tavistock clinic had not managed to keep up with the soaring demand for appointments or “provide the level of appropriate care”, NHSE said. There were 5,000 referrals to Gids in 2021-22, compared with 250 in 2011-12.

Dr Hilary Cass, the paediatrician charged with reviewing the NHS’s approach to children with gender dysphoria, said a shift was needed because there had “been a dramatic change in the case-mix of referrals from predominantly natal males to predominantly natal females presenting with gender incongruence in early teen years”.

In her interim report published in February 2022, Cass noted that a significant number of children were also presenting with “neurodiversity and other mental health needs and risky behaviours which … needs to be better understood”.

Her final review is expected to be published towards the end of this year, but in June she published interim guidance giving clear advice on the new approach. She announced a multidisciplinary model to ensure the focus on gender did not obscure other issues in a child’s life.

Dr Hilary Cass in 2015
Dr Hilary Cass in 2015, when she was appointed as president of the Royal College of Paediatrics and Child Health. Photograph: Graham Turner/The Guardian

The new clinics are to be led by doctors and are based in children’s hospitals, with a wide range of expertise allowing staff to explore what else might be contributing to gender dysphoria – so that in addition to gender specialists, endocrinologists (hormone specialists) and family therapists, the teams will include experts in paediatric medicine, autism, neurodisability and mental health.

Referrals to the service will only be made by GPs, rather than by social workers, charities and schools as well. The prescribing of puberty blockers, which were previously considered a safe way of allowing young people a pause as they considered their gender identity, will only be done as part of a research study after a preliminary review concluded: “… there is not enough evidence to support the safety or clinical effectiveness of PSH [puberty suppressing hormones] to make the treatment routinely available at this time”. The focus will be on family therapy and psychological support aimed at reducing stress and developing self-esteem.

The new approach is outlined in NHSE online guidance for healthcare staff published in August. The Minded modules suggest that, as well as thinking about gender identity when meeting patients, clinicians should consider adverse experiences, sexual orientation, mental health, and wellbeing at school.

The guidance highlights the potentially negative impact of “rapid sharing” on social media of possibly inaccurate content on medical transition. It also notes that “social media can emphasise and reinforce problematic messages about gender norms and stereotypes, such as reinforcing ideas about what it might be to be a ‘proper boy’ or ‘proper girl’”.

New disagreements emerge

But some of those within the team involved in setting up the new services are challenging Cass’s recommendations. Several people told the Guardian tensions were emerging as clinicians tried to draw up training modules for staff. One person close to the work described the atmosphere as “tribal”.

Meetings are said to be polite, but privately clinicians have dismissed those holding opposing views variously as “activists”, for promoting trans rights, or “conversion therapists” or “transphobes”, for questioning a child’s self-diagnosis.

Staff disagree about whether patients should be referred to as “trans kids”, whether new pronouns and new names should be used if parents and children disagree, and about the definition of basic terms, including gender.

“Some clinicians are very affirmative, and believe most patients will benefit from medication and will transition. Others are more cautious and want to think about the child’s development,” a source close to the training discussions said.

“It has been very challenging and there has been a lot of pressure to finalise things when there’s no consensus within the team. I don’t know how we will get to a middle ground.”

One current member of Tavistock staff said: “What they are proposing to do is gender exploratory therapy. My view, as a clinician working in gender services, is that this is tantamount to conversion therapy for trans youth. It’s very problematic and very unethical.”

A spokesperson for Great Ormond Street, which is leading the development of the training, said while “differing views” were welcomed, the final approach would be “aligned to the Cass review findings”.

These tensions have meant many potential recruits are unwilling to take work in such a uniquely combative field of healthcare. Officials have acknowledged that recruitment of medical staff to work in the clinics has been challenging. “Some clinicians are reluctant to come forward to work in this area. It is proving difficult,” a source said.

The polarised nature of the debate is reflected in a 149-page consultation document commissioned by the NHS. The feedback from 5,188 patients, parents and carers and clinicians showed a clear split. One group believed the proposed changes would increase delays and block access to services, and that some doctors were obstructive or explicitly transphobic. A second group took an entirely different view, “with many believing that an increased focus on mental health issues would address what they felt to be the underlying causes of gender dysphoria without children and young people progressing towards what they believed were harmful medical interventions, such as puberty blockers and gender reassignment surgery”.

Business as usual at the Tavistock

As they wait for the new clinics to open, staff at the Tavistock GIDS continue to treat a caseload of about 1,000 patients under the previous model, with a small number of teenagers being prescribed puberty blockers, although prescriptions are understood to have dropped from about 160 a year to about 50.

The Tavistock Centre in London.
The Tavistock Centre in London. Photograph: Guy Smallman/Getty Images

Morale among staff is low because they have not been told if they will be offered roles in the new centres. More than 20 employees have left because of the uncertainty, meaning the remaining team have heavier case loads.

“We feel completely sidelined,” one current staff member said. “We are treated as though we are tainted.”

New patients are being held on the growing waiting list or referred to adult services. The waiting list for the latter stood at 13,818 at the end of August, with people waiting five years for a first appointment.

The parents of Alice Litman, who had been waiting for three years, first on the children’s list and later on the adult’s, and who had yet to have a first assessment when she died in 2020, have spoken powerfully about her struggle to get timely support.

In August, NHSE began sending letters to about 3,000 patients who were either 17 or would turn 17 before next April, telling them the waiting list was so long they would not be seen before they were too old for children’s services, and advising them to get a new GP referral to adult services.

This has caused unease among some clinicians and parents, who argue that 18– to 25-year-olds should be eligible for a more therapy-focused treatment. Under the adult treatment pathway, if a patient is certain about their decision, they can be prescribed cross-sex hormones after two appointments.

Sarah (not her real name), whose 17-year-old child recently received a letter telling her to seek a referral to the adult services, was uneasy about the development. Her teenager had said she wanted to become a boy four years ago, had begun to socially transition, and had been on the waiting list for more than a year.

The child, who has an autism diagnosis, is taking testosterone sourced without a GP’s involvement from an unregulated provider on the internet, and her voice has deepened.

“I’m concerned that the adult system will not explore anything,” Sarah said. “I’m worried it will be: let’s get you on the prescription and see whether we can do surgery. It’s entirely the wrong approach for a vulnerable child. Her autism means she’s significantly behind in terms of her development, but she will be treated as an adult, making decisions that there is no coming back from.”

The mothers of two neurodiverse 17-year-olds are taking the NHS to court, concerned that by shifting their children to adult clinics they risk allowing them to start irreversible treatments, including surgery, without their complex underlying mental health issues being appropriately explored.

The two women say there is a risk that their children’s “coexisting mental health problems will not be properly addressed” in the adult services. The judicial review wants NHSE to align its adult services with its changed services for young people.

Mermaids, the charity for gender diverse children, said the waiting time of five years for an appointment was unacceptable.

“Whilst the set-up for these new gender services are unquestionably complex, the lack of communication surrounding the causes for the delay, or updates on when the new services will be ready, are only exacerbating the situation and causing significant distress to the community,” it said.

An NHSE spokesperson said the establishment of an entirely new gender service for children and young people had proved to be a hugely complex piece of work. “NHS England has fully supported providers to establish new services for children and young people that implement a fundamentally different model of care based on advice from the independent Cass review, and expects providers to start seeing patients as soon as possible, with full-service mobilisation by April at the latest.”

Source link

Home  Articles  Disclaimer  Contact Us