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Over 200 young people from Wales could take part in a study of outcomes for patients receiving gender care

25 Apr 2024 4 minute read
Dr Hilary Cass – Image: Yui Mok

Emily Price

Over 200 people from Wales who received treatment at a controversial London clinic could be recommended to take part in a study of the long-term outcomes for patients receiving gender care at a young age.

It comes following a landmark report which found that NHS gender care for children has been based on weak evidence.

The Cass Review found that young people have been “let down” by a lack of research on the use of puberty blockers and hormones.

Dr Cass said children questioning their gender identity have been caught up in a “stormy social discourse” in a debate that has become exceptionally “toxic”.

The report concluded that “for the majority of young people, a medical pathway may not be the best way” to address their needs.

The probe was first announced in 2020 after concerns were raised about a Gender Identity and Development Service (GIDS) operating out of London’s Tavistock and Portman NHS Trust.

It was the only specialist gender clinic for young people in Wales and England and was closed after being branded “inadequate” by inspectors.

With the publication of the review, it emerged that adult clinics had refused to support a study on outcomes for 9,000 young people who have moved from the now-shut gender service into adult clinics.

Two new regional hubs for children opened in England earlier this month following the closure of the GIDS clinic.

Dr Hilary Cass recommended that the young people who received care at the Tavistock clinic should take part in a follow up study into the long-term outcomes for people with gender dysphoria.

Following the publication of the report, Nation.Cymru launched a probe to find out how many of the patients who attended the Tavistock GIDS clinic were Welsh.

We found that 232 young people from Wales had been transferred to the Welsh Gender Service waiting list.

NHS England has agreed to pick up responsibility from the Cass Review for progressing a data linkage study into long term outcomes but individuals who do not wish to take part can “opt out”.

Requests

When we initially approached the Welsh Government for details of how many Welsh children had been transferred, we were provided with a statement that didn’t include any figures.

A spokesperson said: “We commission gender identity services for young people from NHS England. NHS Wales is represented on the Gender Dysphoria Services Transformation Programme Board in England.

“In line with the commitments in our LGBTQ+ plan, we are committed to improving the Gender Identity Development pathway and the support available for young people in Wales.”

We approached the Welsh Government again but were directed to the NHS Wales Joint Commissioning Committee (JCC).

We sent several emails to JCC and other NHS Wales departments – but were either directed back to the Welsh Government or received no response.

When we approached the Welsh Government again – our request went unanswered.

NHS England was able to provide us with some context but not figures and details we required.

Two weeks after our initial request for a statement, we notified the Welsh Government of our intention to publish a story laying out that they had not provided us with any answers.

We were then immediately contacted by the NHS Wales Joint Commissioning Committee (JCC) team.

Study

A spokesperson said: “There were 232 young people who were transferred from the Tavistock & Portman GIDS to the waiting list with the Welsh Gender Service.

“Like all NHS research, the data linkage study is subject to strict ethical and legal controls with an ‘opt out’ option for individuals who do not wish to have their data used as part of the study.

“We understand that NHS England has agreed to pick up responsibility from the Cass Review for progressing this study, with oversight from their National Research Oversight Board.”

Welsh Conservative MS, Laura Anne Jones has called for an urgent statement from the Welsh Government on the future of gender services in Wales.

She said: “The Welsh Labour Government’s reluctance to comment on The Cass Review is highly concerning.

“Once again we see the Welsh Government acting as though there is something to hide.

“The Cass Review findings and recommendations clearly affect children, young people and adults in Wales, as shown by these figures, and it warrants a full statement by the Welsh Government, as has happened in England and Scotland.

“The current policy in Wales made by the Welsh Government flies in the face of Dr Cass’s recommendations, and we deserve to know, through the proper channels in the Senedd, how this will affect children and young people in Wales, and what of the 32 recommendations, if any, will be adopted by this Welsh Government.”


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Another Richard
Another Richard
27 days ago

All credit to you for your persistence in pursuing this information. It is beyond scandalous that gender clinics refused to cooperate with Hilary Cass when she tried to establish how treatment had worked out for patients in the longer term. If that is not an attempt to cover up failures of treatment, what can be the justification for it?

Incidentally it is worth noting that the Scottish Greens’ grossly inadequate response to the Cass Review may have been a factor in their departure from government and the current politican crisis at Holyrood.

Matt
Matt
26 days ago

As an Intelligence Analyst there’s loads of reasons such as safeguarding, data protection, cost and time or even something as simple as they don’t have the answers to the specific questions. Without the Cass review publishing the actual data requests sent to adult services we can’t tell why the data wasn’t given.

Another Richard
Another Richard
26 days ago
Reply to  Matt

Those were not the reasons given. You should read Annex A of the Cass Report (pp 385-387) if you want to be informed on this topic. The data would have been anonymised, which sees off your points about safeguarding and data protection. The adult services have now been instructed to provide the information and will undergo a detailed review of their own operations. I am sure the outcome will be very interesting.

blc
blc
26 days ago

This report uses unsound methodologies, is full of bias, and reports unsupported conclusions. Its standards for evidence are so unrealistically high that if they were applied to other areas of paediatric medical care, it would disregard treatments & medications in widespread use with decades of evidence behind them. Transgender people were specifically excluded from the review board and instead included people who are anti-trans authors & commentators. Imagine it was a review into women’s healthcare in general, but women were specifically excluded from having any oversight and instead well-known misogynists were welcomed. It is highly flawed, and being used as… Read more »

Jen
Jen
26 days ago

Good investigative journalism from this reporter and Nation.Cymru.
Wales Government still seems stuck in the mantra chant of ‘transwomen are women’ without considering the harms identified by the Cass Report. Our children and young people need more respect and safeguarding.
Perhaps a report on the so called experts who have advised on the WG trans policy is required. Seems not one of that panel has any medical qualifications. Why has an organisation called ‘Glitter’ the ear of ministers?

Matt
Matt
26 days ago

“ The report concluded that “for the majority of young people, a medical pathway may not be the best way” to address their needs.” Which based on the Cass review’s own numbers is already the case. Of the 3,500 children referred to GIDs during the review period, only 10-11% were prescribed puberty blockers (22% refered to an endocrinologist and 50% of that 22% were prescribed) and then 88% of that figure went onto hormones. In the report that comment also isn’t even talking about puberty blockers or hormones. It’s talking about how GIDs weren’t setup to provide mental health or… Read more »

Jen
Jen
26 days ago
Reply to  Matt

The big concern is that the WG is totally silent on any part of the Cass Review. It is not just about puberty blockers. But we have had nothing about the recommendations for holistic services and the waiting times for CAMHS in Wales. Cass pointed out that a lot happens to children and young people before they and their families reach the front door of the NHS. She devoted a whole section with recommendations for schools and their relationship with families and peers. The WG ignored the Interim Report and seems to be still hoping Cass will go away. Jane… Read more »

Matt
Matt
26 days ago
Reply to  Jen

It’s not just the Cass review. I was diagnosed as autistic shortly before Vaughn Gethin torpedoed the autism bill that would’ve put targets and timescales down. Welsh Labour’s refusal to deal with scrutiny is the big scandal here.

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