More on Health Sec Sajid Javid legally intervening to tell adult clinics to release data to researchers here. As I said upthread, credit to him for taking that action:
https://www.mumsnet.com/talk/womens_rights/5046919-refusal-of-adult-gender-clinics-to-take-part-in-study-shocking-david-bell?reply=134426036
The Telegraph also carries an opinion piece by current Health Secretary Victoria Atkins who has very importantly accepted Cass’ recommendations. She is committing to taking action in various ways to effect them. Including on this crucial point of adult gender clinics not releasing data for research.
Atkins says she is ‘working closely’ (ie putting pressure on) the NHS to sort that out. Credit to her. She is listening to Cass, thank goodness. The Health Secretary’s active support will be absolutely vital to getting this scandal turned around for future children and young people. I hope Atkins is able to make as much progress as possible with this in the few months before the general election and that subsequent governments don’t lose sight of it.
The Telegraph gives detail on this non-release of NHS data. It sounds like Javid’s reported ‘legal changes’ weren’t legally mandatory about the adult clinics having to actually hand any data over; but simply legally allowed the NHS to hand over the data to the Cass review/York researchers. That makes sense, if it’s NHS England that needs to write to the trusts to mandate that the data must be released. But why are they only doing that now?:
https://www.telegraph.co.uk/news/2024/04/10/nhs-bosses-ordered-reveal-fate-of-young-trans-patients/
Javid was in office June 2021-July 2022 and we’ve had four changes of health secretary in less than 2 years since- Javid to Barclay, then Coffey, then back to Barclay and now Atkins.
https://en.m.wikipedia.org/wiki/Secretary_of_State_for_Health_and_Social_Care
That shocking turnover in Ministers and PMs clearly hasn’t helped and just shows how unstable government bogs down the effective working of central government when we need it to be active.
The Guardian quotes Cass as saying:
‘Cited reasons for the six trusts’ refusal to cooperate included ethical considerations, although Cass said Health Research Authority approvals had been granted, and resource impacts, although Cass wrote the clinics were “contractually required to take part in research and appropriate costs would have been met by NHS England”. …
‘There was no substantive reason for it. So I can only really conclude that it was because they didn’t feel that it was the right thing to do to try and nail down this data,” she told the Guardian. “They were putting up reasons that didn’t that just didn’t hold water.
“Clearly, the trans community is fearful, rightly so, about their rights and about their healthcare. They’ve had a very bad deal in healthcare. I can understand that both they and the people delivering the service will be fearful about anything that might question that. But I think we have to separate the rights of older adults, whom we have more data on and who are at a stable point in their life for making decisions, from younger people who are still in a developmental trajectory.”
https://www.theguardian.com/society/2024/apr/10/adult-transgender-clinics-in-england-face-inquiry-into-patient-care
The Telegraph article also says:
‘Research led by the University of York had been due to look at the long-term outcomes of children treated by the Tavistock.
It was expected to provide insights into the clinic’s work, including the number of patients treated with puberty blockers and cross-sex hormones, how many people detransitioned and how many had a “co-occurring mental health diagnosis” or a “diagnosis of autistic spectrum disorder”. The review had been given the power to access medical records.
Ms Atkins says: “It is disgraceful that adult gender clinics have not co-operated with the vital University of York research to link data on children at the Tavistock so that we can understand their journey into adulthood.
“This Government took the unprecedented step of changing the law to make this possible. There can be no further delay on their full participation. I know that NHS England will use all the powers at their disposal to compel this if they have to. Nothing less than full cooperation by those clinics in the research is acceptable.”
Sajid Javid, the former health secretary who gave the independent review powers to access medical records in 2022, called for “a no holds barred government investigation” to hold those responsible to account for obstruction.’’
I totally agree with Javid about need for further investigation and appreciate him speaking up. It really looks like we need a public inquiry, because there are issues that are outside Cass’ remit that need to be unpicked to stop this happening again.