Agree Lang
Primary care is wholly inappropriate for dealing with the likely complex needs of this patient group which is very likely to include highly vulnerable adults.
Truth it’s appalling isn’t it. This is such a huge public interest area. Fair enough we are in the grip of a national political Brexit crisis but loads of us have been regularly writing to our MPs about this for years now. How the fuck are politicians still ignoring this?
Honestly when you think about it, Parliament have acted to bring in more legal red tape and safeguards and ethical oversight- and rightly so- in the public interest, around what can we do with:
-Our personal medical or other data,
-NHS patients who take part in research
-anyone who takes part in clinical trials,
-what we can do with living animals whether in research
-or if they are being killed for meat,
-what we can do with dead human bodies,
-or with bits of human tissue that has been taken out of human bodies,
-or what we can do with human embryos in IVF treatment or in embryo research.
Or for another example: abortion is safe when profesionally and legally provided. I don’t think two doctors’ signatures are needed for competent adult women to end a pregnancy in most circumstances.
But how can Parliament justify requiring on the one hand that whole process with adult women- when we allow no such democratic oversight whatever of what we can do with living children’s bodies with permanent health effects at an age when the patient themselves can’t possibly understand what they are giving up, nor the risks of what they are taking on, and there isn’t any proper evidence of clinical benefit to them. it is shocking.
This is why we have to keep on talking and keeping journalists covering it. It is a scandal and it will keep growing.
We need Parliament to have a Commons Health Select Committee Inquiry to look at this properly. After examining this properly surely to keep children and young people safe they will HAVE to recommend a statutory regulated system, with licensing, case by case application and frequent regulatory inspection of clinical work in this area.
Clearly this would need to be based on evidence but you can imagine just from things anecdotally posted on here, that at a minimum to safeguard patients:
-Parliament should make it illegal for anyone but a licensed doctor (whether NHS or private) to give a specific child or person under 25 years old blockers or hormones or surgery except under licensed conditions after a case by case review process.
-Same for surgical egg retrieval and surgical sperm storage and storing of prepubescent children’s and young people’s ovarian or testicular tissue (in hopes that one day mature viable eggs or sperm might be able to be derived from these.)
The law should also require that:
-There should be a duty for the clinicians who do this work to collect and share their outcomes data for all these patients from medical records so it can be properly researched.
Binders should be classed as a prescription-only medical product and again only possible to provide legally under clinical supervision.
Talking therapy must be made more available and there should be statutory maximum of the waiting times any young person should be expected to wait until they can speak to a proper professional about these issues. (And for other issues while we are at it)
There should be proper government data collection in this space so we know the full picture of what is being provided in both public and private sector.
Criminal sanctions for those who break these laws.
Then a separate campaign to get research funders to fund appropriate professional researchers to properly investigate patient outcomes and to run studies to follow up patients in anonymised ways via medical records.
And also to fund sociological research (like I think James Caspian wanted to do) interviewing de-transitioned people, medically, hormonally and surgically transitioned people, those currently transitioning via services, and young people and children who are having talking therapies only. There’s probably other relevant groups I haven’t thought of.
Research should also be funded to talk to family members so they can talk about their experiences of caring for children and young people in this space.
Also research needs to be funded for the clinical service providers to talk about their professional experience of doing this work.
I’m sure others can think of relevant helpful things to include. My thoughts might not be right either I am no expert in any of this but this seemed like a good place to start from the things people are worried about on here and might go some way to curbing the TRA lobby trying to inappropriately influence medical services.
Groups with power in this area should all be taking a stand and calling for an inquiry into this NOW. So that would include.
All of the medical and psychological professional societies and royal colleges, the BMA (the doctors’ trade union) and the regulators of medical or psychological practice like the General Medical Council,
Plus any organisation who supports research and evidence based medicine, especially in the NHS- like NICE, the NHS in each UK nation, but also the government departments in health, the medical and scientific research funders,
Plus any childrens’ and young people’s paediatric medical groups and bodies.
Sorry to write such long posts on here- I wonder if we need a separate ‘what do we think should happen next when the scandal inevitably builds’ thread?