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Topics related to gender identity - and issues that are relevant to many trans people's lives - have thankfully been receiving greater attention in the UK in recent years. This includes increasing interest in our service and what we do.

We welcome media enquiries about our work. Please contact our Trust’s dedicated press office who will be happy to help.

Early Intervention Study shows puberty blockers are a well-received intervention in carefully selected patients

Starting in 2011, the Gender Identity Development Service at the Tavistock undertook the Early Intervention Study to provide a research framework to the lowering of the age at which young people could access puberty blockers from 16 to 12. Today, a peer-reviewed paper published in PLOS one, describes the medical, psychological and social outcomes for young people with persistent and severe gender dysphoria treated with puberty blockers.

The paper, by a team of Gender Identity Development Service (GIDS) clinicians and independent researchers, including eminent professors of medical statistics and paediatric endocrinology, reports on the cohort of 44 young people enrolled in the study between 2011 and 2014. The study also evaluated the efficacy of treatment and considered the persistence of gender dysphoria and decisions about future treatment.

The participants attended GIDS at the Tavistock and Portman NHS Foundation Trust where they were assessed and received psychological support. They were referred to University College London NHS Foundation Trust for physical evaluation and treatment. All patients achieved and maintained suppression of pubertal hormones and none experienced pubertal progression. At the end of the study, 43 (98%) chose to start cross-sex hormones whilst one young person chose to stop GnRHa and continue with puberty consistent with their birth-registered sex.

The paper, ‘Short-term outcomes of pubertal suppression in a selected cohort of 12 to 15 year old young people with persistent gender dysphoria in the UK’, shows that overall patient experience of changes on gonadotropin releasing hormone analogues (GnRHa) treatment (commonly called ‘puberty blockers’) was positive and there were no unexpected adverse events. Those expected adverse effects reported (headaches, flushes, fatigue, etc) were mainly mild.

The study identified little change in psychological functioning, but the experience of treatment as reported in interviews was positive for most. The majority reported feeling happier and having better relationships with family and peers once treatment had begun. However, some reported negative changes, which were largely related to the anticipated side effects.

For the study, a highly selected group of young people who along with their families were actively seeking this treatment and fulfilled the eligibility criteria were invited to take part after lengthy assessments (two years on average). These young people had been experiencing gender dysphoria which had been consistent and persistent over at least 5 years and had significantly increased with the onset of puberty, with a high likelihood of severe psychological distress on facing full pubertal development. A key purpose of GnRHa treatment is to pause puberty, to avoid a deterioration in wellbeing and allow for further exploration of a young person’s feelings about their gender identity and their wishes for the future, without the pressure or distress which may come from further unwanted bodily changes. The lack of change observed in psychological function can signify one of two things. Either that GnRHa treatment brought no measurable benefit nor harm to psychological function. Or that the lack of change in an outcome that normally worsens in early adolescence may reflect a beneficial change in trajectory for that outcome, i.e. that GnRHa treatment prevented a typical deterioration of psychological function over this period.

The young people involved in this study experienced severe gender dysphoria which had persisted into adolescents and the early stages of puberty. The fact that 43 out of 44 of them went on to access gender-affirming hormones is consistent with other studies internationally where the discontinuation rate varies, but is typically in the 2-5% range.  However, one young person did stop treatment without progressing to cross-sex hormones. This provides some evidence that development of gender identity continues on GnRHa treatment and confirms the importance of continuing supportive psychological therapy to allow further exploration of gender identity and a range of future pathways whilst on this treatment. It is also worth noting that three participants had periods off treatment before they were 16 for a range of reasons demonstrating further that patients can and do decide to interrupt treatment.

As anticipated, pubertal suppression reduced growth affecting both height and bone mass density. In both cases (height and bone strength) there was some growth but less than would be expected during those years without hormonal suppression. There was no loss of bone density over the study period and the expectation is that the resumption of growth on both counts would be achieved when puberty resumed either naturally or via cross-sex hormones administered from 16. Further papers on bone strength have been published (inc. by some of the authors) supporting this hypothesis though research into long-term bone mass density recovery on this treatment pathway is underway.

Overall, the paper suggests that larger and longer-term prospective studies using a range of designs are needed to more fully quantify the benefits and limitations of pubertal suppression for those experiencing gender dysphoria. The study size and uncontrolled design were key limitations, meaning small changes in outcomes and causality could not be determined. This cohort will be followed up longer-term to examine physical and mental health outcomes into early adulthood.

Dr Polly Carmichael, Director of GIDS, says: “This paper adds to our understanding of the best way to support these young people. The results show patient experience on the blocker is positive overall and there were no unexpected adverse events, but that more research is needed around this complex issue.”

Professor Russell Viner, Professor of Adolescent Health at University College London (UCL), added: “At all stages of the process we have followed rigorous ethical guidelines. We have published findings in an open access international peer-reviewed journal with open peer review.  We have also placed carefully anonymised data from the study in the public domain to allow other researchers to replicate our main findings.”

Professor Tim Cole, Professor of Medical Statistics at UCL, explained: “The formal analysis plan protected against drawing unwarranted conclusions given the small and uncontrolled study sample.” 

Professor Gary Butler, Consultant in Paediatric and Adolescent Medicine and Endocrinology at University College Hospital London NHS Foundation Trust said: “We are glad to add to the evidence base for the puberty blocker, showing its safety and the value this treatment has for young people.”

Read the paper on the PLOS ONE website.

Statement in response to the January 2021 CQC report on GIDS

In 2016 the CQC rated our Gender Identity Development Service as Good, but following its inspection in October, it has now rated the service ‘inadequate’.

A spokesperson said: “We take the CQC’s report very seriously and would like to say sorry to patients for the length of time they are waiting to be seen, which was a critical factor in arriving at this rating. We know the difficulty this wait is causing them and their families and we agree with the CQC that the growth in referrals has exceeded the capacity of the service.

We very much accept the need for improvements in our assessments, systems and processes. In addition, we have submitted our plan to improve the management of our waiting list to the CQC and are working with our commissioners, NHS England, and others to improve access to the service. We are determined to get this right for children and young people and will be agreeing a full action plan with the CQC to address further concerns.

We are already finalising plans to bring in senior clinical and operational expertise from outside the service to help us implement the necessary changes and consider how we can improve on current processes and practice – including how we standardise our assessment process.

We will continue to support Dr Hilary Cass who has been commissioned by NHS England to make recommendations on the care provided to children and young people questioning their gender identity or experiencing gender incongruence.

Above all, we remain focused on providing a high quality service to children and young people in our care and supporting our staff who, despite the challenging context they have been working in, have been praised by the CQC for their understanding, compassion and kindness. Patient feedback was reported as overwhelmingly positive and we will involve both patient and staff as we build on these strengths.

The GIDS endocrinology services at UCLH and Leeds Children's Hospital, which prescribe any medication to young people, were also reviewed. The findings at both were positive, the CQC noting that they “supported young people and their families to make informed decisions” and “had a good understanding of Gillick Competence and applied this proportionately when obtaining consent from young people.”

The Tavistock and Portman NHS Foundation Trust is committed to providing high quality care to patients and its overall rating remains ‘good’.”

Video message from Paul Jenkins, CEO, to the young people and families supported by GIDS

Watch on Youtube.

An open letter from the CEO of the Tavistock and Portman NHS Foundation Trust

In recent times, the Gender Identity Development Service has found itself in the middle of a cultural and political battleground. This followed a rapid rise in referrals which has been hard to manage, both in terms of the numbers but also the wide range and often complex needs of patients seeking support.

The Care Quality Commission (CQC), our regulator, rated GIDS as good in 2016, but following an inspection last October has today rated the service as ‘inadequate’.

I entirely accept we have struggled to manage our waiting lists and agree with the CQC’s assessment that the growth in referrals has exceeded our capacity. As a result, vulnerable young people and their families have not had adequate access to the care they expect and deserve. I would like to apologise for falling short in our support of young people and families. I know from my own inbox just how challenging these long waits are, particularly in the current climate.

We also recognise the importance of making our decision-making process more systematic, consistent and transparent, particularly in relation to assessments and improving record-keeping.  The Trust carried out an internal review of the service and published an action plan in March 2019. We’ve made significant progress in implementing the recommendations of this plan, but we know we have a lot further to go. We will be addressing this in the action plan we are producing for the CQC in response to the requirements they have set us.

We are already making plans to bring in independent clinical and operational expertise to work with our staff to build on the changes we’ve made.

Embedding these improvements will be a significant undertaking for our staff and I personally pledge to support them through this period. GIDS is recognised by the CQC as a caring and dedicated group of NHS professionals I am proud of their skill and dedication. Patient feedback was reported as overwhelmingly positive and we will involve both patient and staff as we build on these strengths as we move forward.

We will also continue to support Dr Hilary Cass who has been commissioned by NHS England to make recommendations on the care provided to children and young people questioning their gender identity or experiencing gender incongruence.

I will continue to keep everyone updated with the progress we make. I want to reassure you we will continue to listen and work with everyone to answer questions as honestly and as quickly as we can.

You can read the full report on the CQC website.

Best wishes,

Paul Jenkins, Chief Executive, The Tavistock and Portman NHS Foundation Trust

Permission granted to appeal High Court judgment on consent for puberty-blocking treatment

On 1 December 2020 the High Court ruled that children and young people may not be able to consent to puberty-blocking treatment in cases of gender dysphoria.

The Tavistock and Portman NHS Trust, which leads the national Gender Identity and Development Service (GIDS), has today (Monday 18 January) been granted permission by the court to appeal against the ruling, alongside University College Hospitals NHS Foundation Trust and Leeds Teaching Hospitals NHS Trust, whose paediatric endocrinologists prescribe and administer puberty-blocking drugs on behalf of GIDS. 

On 1 December 2020 the High Court ruled that children and young people may not be able to consent to puberty-blocking treatment in cases of gender dysphoria.

The Tavistock and Portman NHS Trust, which leads the national Gender Identity and Development Service (GIDS), has today (Monday 18 January) been granted permission by the court to appeal against the ruling, alongside University College Hospitals NHS Foundation Trust and Leeds Teaching Hospitals NHS Trust, whose paediatric endocrinologists prescribe and administer puberty-blocking drugs on behalf of GIDS. 

Our statement in response to the court’s decision today is as follows:

A spokesperson for the Trust said: “We welcome the court’s decision to allow us to appeal against the ruling. Our priority is to work together with our partners to support our patients and their families while legal proceedings are ongoing.”

For accurate and up-to-date information about the ruling and the appeal visit the GIDS website: https://gids.nhs.uk.

Journalists should email communications@tavi-port.nhs.uk