How We Could Reform ‘Transition to Adulthood’ care in the NHS

A look at seamless transition – not of gender, but from childhood to adult life. How well does the NHS support vulnerable teens with gender distress as they move into adulthood? And, as parents of those teens, what might we want a gender service to look like? This post started off as a Twitter thread, which you can access here.

NHS England is thinking how to support under 18s distressed about gender. Its contract with for GIDS has expired & a new one needs working out. The Hilary Cass evidence review is part of this periodic look at GIDS. Two things have changed since GIDS was last reviewed:

1. Rise of adolescent-onset gender dysphoria: young ppl with complex needs presenting in their teens, requiring careful, exploratory assessment.

2. The huge increase in waiting times (vastly increased referrals + compromised capacity due to staff turnover). GIDS is contracted to see patients within 18 wks of referral, but has been unable to meet the target for years.

The result? Many vulnerable young people won’t be seen by GIDS at all. GIDS “currently see young people who were referred 22-26 months ago” & some are waiting as long as 3yrs. If referred at 15, you’ll likely go direct to an adult clinic; but they are not set up to cater for the complexity. Over 1000 children under 18 were referred to adult NHS clinics in 2018/19. Below, figures for two (Charing Cross & Cumbria).

Referral figures for Cumbria Adult Gender Identity Clinic (2018/19)

By contrast, just 88 17yr olds were referred to GIDS in the same year. So GIDS is contracted to look after all children up to the age of 18, but it cannot. Circumstances mean that it must pass on most mid-to-late-teen referrals on, to adult clinics.

These details from a 2019 audit of patients at the Sheffield adult clinic provide a picture of the level of complexity of their intake. It’s an old problem. Here’s Bernadette Wren at a HoC select committee as long ago as 2015:

2019 Audit data, Sheffield GIC

It’s an old problem. Here’s Bernadette Wren at a House of Commons Select Committee as long ago as 2015:

And here in this article, a GIDS Clinician who felt that the funding mechanism left older teens with a truncated assessment because care beyond their 18th birthday had to take place in the adult service

The mum of a young adult, who wrote about her experiences in the system, also touches on this. NHS England recognise the issue.

In March 2018 the top commissioning group, the ‘Programme Board’, heard that:

“the current service model is unable to accommodate increasing demand, and workforce is a major challenge in delivering these services…Whilst an integrated approach for patients of all ages is required, the model will need to recognise the particular needs of adolescents.” (From the Specialised Commissioning Programme Board for Gender Identity Services Minutes, 13 March 2018)

In May 2018 the ‘Programme Board’ discussed the transfer of young people from GIDS:

“Polly Carmichael was content with the proposal that there be no amendment to the age threshold in the service specification for GIDS. This is contrary to the consultation guide that proposed that the service specification for GIDS would be amended to increase the age threshold to 21 years in exceptional cases. Instead, GIDS service specification will retain an age threshold up to 18 years. Members agreed that the Board should proceed with a programme of work to describe in more detail the proposed Integrated Adolescent Service in 2019/20, once the procurement of adult services is complete.”

And in February 2019 the Programme Board agreed “to discuss the emerging national review of the children and young people’s service… CR noted that this should be done in the context of what the Long-Term Plan says about the provision of care for 16-25 year olds.”

So what does the NHS Long Term Plan say?

“We will extend current service models to create a comprehensive offer for 0-25 year olds that reaches across mental health service for children, young people and adults.”

There is a wealth of advice that, as the Royal College of Physicians says, “young adults and adolescents (YAA) aged between 16 and 25 years need to be considered as a defined population.”

An NIHR study into transitional healthcare recommended more joined-up commissioning, services that adapted to young people’s communication styles, and parental involvement. Adult services make the mistake of leaving transition to children’s services.

The Joint Commissionning Panel on Mental Health recognises

  • The ages 16-18 are a particularly vulnerable time when the young person is both more susceptible to mental illness, is going through a period of physiological change, and is making important transitions in their education
  • It is also the age at which the young person already in contact with mental health services will move from child and adolescent services (CAMHS) to adult services (AMHS)
  • Th eway mental health services are sytructured creates gaps through which young peopl emay fall as they undergo the transition from CAMHS to AMHS
  • Young people with mental health problems whose needs have been met primarily by paediatric, education or social care may find that ther eis no equivalent service for adults
  • Services “should not be limited to strict age boundaries but should operate in response to need and to provide continuity.”

A CQC report on transition planning (2014) states “Adolescence/young adulthood should be recognised across the health service as an important developmental phase – with NHS England and Health Education England taking a leadership role.”

The NICE guideline on transition to adult services (2016) says”everyone working with young people in transition up to the age of 25 [should understand]… young people’s development (biological, cognitive, psychological, psychosocial, sexual, social)”

The NHS’s toolkit for delivering developmentally appropriate healthcare says “young people’s development does not have a fixed time frame attached. Much of this development will take place after reaching the legal age of adulthood at 18.”

The Tavistock and Portman NHS Trust that currently runs the child gender service, demonstrates this good practice in its other services. eg a consultation service “for parents & carers who are concerned about the mental health of a child or young person” aged 14–25. Its mental health service aims to “help people between the ages of 14 & 25 who struggle with any emotional or relational aspect of being an adolescent or young adult.”

And GIDS itself made news with its move from a rigid age-based approach to treatment in 2014, making puberty blockers available to children as young as 9 or 10.

“we’ve decided to do ‘stage not age’ because it’s obviously fairer. 12 is an arbitrary age. If they started puberty aged 9 or 10 instead of 12… then it is right that the aim is to stop the development of secondary sex characteristics.” But care at the other end of the service goes, it’s still a rigidly ‘age’ not ‘stage approach.

The Daily Mail

NHS organisations like the Tavistock are simply vehicles for delivering a clinical benefit to a population. Structural change is hard, but what’s at stake here are the life chances of our vulnerable children.

A seamless, developmentally-informed service that situates gender distress in the wider context of mental health and developmental problems.

A service that is timely.

A service that is local: a national monopoly throughout NHS England isn’t the result of patient-led design, but historical accident. Most children, most of the time, will be better off being seen weekly, close to home, in a service that can look at their problems in the round.

A model that starts and ends in primary care in the communities that people live in. Manualised and continually tested at all decision points.

Overseen by a home institution with experience in the complexity of the comorbidities as well as a research and learning culture

James Palmer has suggested that up to 3% of Britons will seek NHS help for gender ID problems – millions of people. This is distressing for them & expensive for the NHS. So there’s a big role for public health messages that reassure & inform teachers, families, school nurses about the natural role of gender exploration within childhood & adolescent development that does not need to be prematurely ’solved’ by (intended permanent) medication.

We need a public health strategy that helps people make good choices & live fulfilling lives without unnecessarily becoming long-term NHS patients. Public health is happy to comment on almost every aspect of our lives today, but is oddly inhibited when it comes to gender ID. Finally, governance. Private sector gender healthcare is a wild west due to the regulatory gap that permits Gender GP to prescribe puberty blockers and cross-sex hormones without diagnosis and after only a cursory assessment, at ages very significantly below those in NHS protocols.

Although parents feel they are doing their best by seeking out medical solutions to their children’s distress, their life chances are being compromised.