Tavistock children's gender clinic closure leaves uncertain future
- Published
There are more than 7,500 children and young people with gender incongruence or gender-related distress waiting for help from the NHS.
Many have been waiting years - with nothing on offer.
The Gender Identity Development Service (Gids) at London's Tavistock and Portman NHS Foundation Trust is due to close this spring.
It is the only NHS gender clinic for children in England and Wales, and what happens next is uncertain.
Gids will be replaced by two new early adopter services: one in London, the other in north-west England.
But until NHS England confirms the guidelines that will underpin these services, the personnel in charge, and what the precise clinical offering will be, young people and families are left in the dark.
In the meantime, Gids' workforce is depleting, and is unable to take on any meaningful number of new cases. The waiting list for care grows longer.
We know that the aim is that the new services will offer more holistic treatment to this diverse group of young people.
There will be mental health support and services that cater to children and young people who are autistic or neurodiverse, alongside access to medical treatments - puberty blockers and hormones - and fertility services for those commencing these treatments.
The decision to close Gids followed the recommendation from Dr Hilary Cass as part of her official review into the care provided to gender-questioning young people, that a "fundamentally different service model is needed".
It is hoped the new services will address one of the frequently cited criticisms of Gids: that it could not adequately respond to all of the needs of the young people seeking its help.
Since 2019, I have investigated the care provided by Gids for BBC Newsnight, along with my former colleague Deborah Cohen.
I have spent the last two years writing a book telling the inside story of the clinic from the views of those with first-hand experience. In the process I have spoken to dozens of staff - many of whom tried to raise concerns over a number of years.
I have interviewed former Gids service users, other figures in the Tavistock Trust and NHS insiders too.
I am not a clinician, but this is some of what I have learned.
Staff have told me, and Dr Cass confirms, that young people seen by the service often have "complex needs".
However, once they are identified as having gender-related distress, "other important healthcare issues that would normally be managed by local services can sometimes be overlooked, external".
These two new services are the first step in establishing more regional gender services for young people.
It is anticipated there may end up being seven or eight regional centres. With more centres offering better and broader care, it is hoped young people can be seen closer to home and more quickly.
There is not consensus on what good care looks like, but one rare thing upon which all agree is it is not a good thing for young people to be waiting for years in distress without any help.
But these early adopter services appear to be facing problems before they have even opened their doors.
Current Gids staff say there is no way their successors will be up and running by the spring, as hoped, external, and that even a later June target seems impossible to reach, external.
The task ahead is mammoth. But some former Gids staff who were highly critical of the work of the service feel "hopeful and optimistic".
Anastassis Spiliadis, a psychotherapist who worked at Gids between 2015 and 2019, says that the London hospitals involved - Great Ormond Street Hospital and South London and Maudsley (SLAM) NHS Foundation Trust - have the necessary background to provide good care going forward.
"Both of these trusts are very research-focused," he said.
Mr Spiliadis, who still works with young people experiencing gender-related distress, explains that SLAM is a "world-renowned centre for both developing and evaluating therapeutic interventions and therapeutic models".
It speaks to two key points identified by Dr Cass in her interim review that she recommends should guide new gender services.
The first is the need to collect routine and consistent data so that the outcomes of children and young people being seen can be tracked.
And the second is to offer multiple treatment pathways, acknowledging that "hormone treatment is just one possible outcome for gender-questioning children and young people".
Different young people will require different types of help.
It is an approach Mr Spiliadis favours.
While not ruling out hormone blockers as a pathway for some young people, he sees it "as not the first-line intervention as it has been used in a more affirmative way, both in the United States and in the UK".
Many former Gids staff say they were concerned the service was referring young people for physical interventions who were very different to those for whom the existing, limited evidence base applied to.
Rather than being psychologically stable, experiencing gender incongruence from childhood, and living in a supportive environment, the majority of those seen by Gids had only started to experience gender incongruence in adolescence and often had other mental health problems alongside their gender difficulties.
"At present we have the least information for the largest group of patients - birth-registered females first presenting in early teen years," Dr Cass has said.
Worried Gids clinicians questioned whether a treatment designed for one group should be applied to another, very different one.
Mr Spiliadis says clinicians started from the premise that there are "different ways or different reasons why someone might end up developing gender dysphoria".
"And that's the big difference between affirmation and exploration," he says.
The science in this field of healthcare is not settled.
A systematic review undertaken by the National Institute for Health and Care Excellence found the quality of the evidence for using puberty-blocking drugs to treat young people struggling with their gender identity was"very low", external.
Dr Cass has recommended that the new gender services must help try to plug these gaps in the evidence base.
For this reason, NHS England has proposed that access to puberty blockers should only be permitted as part of a formal research programme.
Dr Cass points out that, without additional research "the evidence gap will continue to be filled with polarised opinion and conjecture".
"[This] does little to help the children and young people, and their families and carers, who need support and information on which to make decisions."
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