A thread about 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? /1
@NHSEngland is thinking how to support under 18s distressed about gender. Its contract with @TaviAndPort for GIDS has expired & a new one needs working out. The @Hilary_Cass evidence review is part of this periodic look at GIDS. /2

england.nhs.uk/2020/01/update…
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. /3
GIDS discussed this recently in ‘Reflections on emerging trends in clinical work with gender diverse children & adolescents’ (2019)

journals.sagepub.com/doi/10.1177/13…
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.

tavistockandportman.nhs.uk/about-us/gover…
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” & 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)
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:

data.parliament.uk/writtenevidenc…
And here, 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.

transgendertrend.com/tavistock-gids…
The mum of a young adult trans woman who wrote about her experiences in the system, also touches on this.

bayswatersupport.org.uk/parents-of-adu…
@NHSEngland 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."
In May 2018 the 'Programme Board' discussed "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.”

longtermplan.nhs.uk/online-version…
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."

rcplondon.ac.uk/projects/outpu…
An NIHR study into transitional healthcare recommended more joined-up commissioning, services that adapted to young ppl's communication styles, & parental involvement. Adult services make the mistake of leaving transition to children's services.
journalslibrary.nihr.ac.uk/pgfar/pgfar070…
The Joint Commissionning Panel on Mental Health
recognises "the way mental health services are currently structured creates gaps through which young people may fall as they undergo the transition from CAMHS to AMHS"
Services "should not be limited to strict age boundaries but should operate in response to need and to provide continuity."

jcpmh.info/wp-content/upl…
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."

cqc.org.uk/sites/default/…
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)"

nice.org.uk/guidance/ng43
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."

northumbria.nhs.uk/wp-content/upl…
The Trust that currently runs the child gender service, @TaviAndPort, 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.

tavistockandportman.nhs.uk/care-and-treat…
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."

tavistockandportman.nhs.uk/care-and-treat…
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.

dailymail.co.uk/news/article-2…
“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 2ndary sex characteristics.”
But care at the other end of the service goes, it's still a rigidly 'age' not 'stage approach.

NHS organisations like @TaviAndPort 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 @NHSEngland 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 @GenderGP to prescribe puberty blockers and cross-sex hormones without diagnosis & 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.

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More from @BayswaterSG

15 Sep
Young people use the internet to construct transgender identities & parents need help to understand this.

So we recommend @Transgendertrd ’s excellent new essay on youtube influencers, which you can download free here:

transgendertrend.com/wp-content/upl…

>>
The ‘social laboratory’ of the internet is widely acknowledged. GIDS itself sponsored a D.Psych thesis by Xinyi Lee, on “transgender youths’ experiences of using social media”, based on 11 patient interviews. Download it here:

repository.essex.ac.uk/21276/
As Dr Lee wrote, “parents & clinicians [should be] working together in ensuring that social media use does not pose a risk… it is important for parents to be equally aware of the nature of social media platforms and the potential benefits & risks posed”

>>
Read 9 tweets
28 Jun
*just published*

New analysis of Dutch and UK outcomes for early pubertal suppression concludes that "results were more negative than positive for the English females”, who became more dissatisfied with their bodies.

rdcu.be/b5hsT
>>
It "question[s] widespread assumption that outcomes from Netherlands can be generalised to other countries” 20+yrs after Dutch model was introduced, “strongest evidence for treating GD with GnRHa comes from observations of between 41 & 57 subjects - lacking any control group”
>>
Our NHS gender service now treating thousands of children each year for gender dysphoria (GD) must be able to rely on good quality evidence, to assure families and society that good outcomes will ensue.
>>
Read 8 tweets
4 Jun
In 2010/11, GIDS and UCL began a research study into the use of puberty blockers for gender dysphoria - the ‘early intervention study’ (whose results are still unpublished). In their ethics application form, they said:

“concerns have been expressed in the following areas: …>>
“1. It is not clear what the long-term effects of early suppression may be on bone development, height, sex organ development, and body shape and their reversibility if treatment is stopped during pubertal development."

>>
“2. It is argued that it is possible that early suppression may affect brain functioning and gender identity development by influencing the pesistence of the GID and fixing transgender beliefs.”

>>
Read 9 tweets
18 May
Some people make their living agitating for children to gain access to puberty blockers (PBs). They want teenagers to celebrate their bodily distress as a human right – as if their identification as 'trans' were a solution to their problems rather than a manifestation of them.
>>
We seek a realistic conversation about the rise in demand for & growth in supply of blockers in recent yrs & how we can set a better path for gender-distressed children. We intend to foster this discussion with govt, health & education authorities. Below we set out one concern
>>
Early treatment with PBs in the NHS is based on a Dutch initiative to improve outcomes for children who'd later have sex-reassignment surgery. The earlier in life you began medical interventions, the better you'd pass in later life, which improved psychosocial functioning.
>>
Read 21 tweets
23 Dec 19
For @BBCPanorama Carl Heneghan, Professor of Evidence-Based Medicine at Oxford Univ, analysed the evidence about medical interventions for gender dysphoria in children. (The Times, 8 April 2019). This is what he wrote. >>

#AskForTheEvidence
Prof Heneghan wrote:
"You would think, when it comes to children, the testing and evaluation of medicines would be robust — ensuring the utmost safety. Well, you’d be wrong." >>

#AskForTheEvidence
"The mess we have gotten ourselves into with the treatment of gender dysphoria in children and adolescents highlights all that is concerning with the present use and evaluation of powerful medicines in this age group." >>

#AskForTheEvidence
Read 9 tweets

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