NHS England and NHS Improvement - Puberty blockers update

[ItsAllGoingToBeFine]

www.england.nhs.uk/commissioning/spec-services/npc-crg/gender-dysphoria-clinical-programme/update-following-recent-court-rulings-on-puberty-blockers-and-consent/

Summary: children already on PBs can continue, with parental consent.

New patients currently require court order to start, but this will be replaced by a "decision group" of experts which will examine the decision making processes.

@Changemusthappen

So would I be correct to say that they are 'getting around' the problem of potentially prescribing very damaging medication to children which the court ruled they could not do and which could lead to them being sued by asking parents to sign on the dotted line? Thus they are absolving themselves of any responsibility?

It's a bit like the Gillick competence test in that, the GP will decide if the child is competent enough however it is the parents that have to pick up the pieces if things go wrong. In this case they could/will go very wrong.

How are most parents qualified to do this? The pressure will be from the child and the TRA groups to go for blockers, it will take a very strong parent to say 'no' and I assume both parents will be asked?

That's a really dangerous analogy and plays into the hands of Good Law and other bad-faith actors, who are trying to scare people into believing that the Bell judgement undermines Gillick competence principles.

With Gillick competence decisions, the child is competent to be the decision-maker. Yes, young people may make bad decisions - just like adults - but they are free to do so, provided they understand the consequences. The alternative is a world where young people are deprived of bodily autonomy, despite having full competence, because they happen to be under 16. I know most MNetters live in a La-La land where parents always know what's best for their kids and try to do it. Unfortunately, those of us who work as HCPs have to operate in the real world where some parents don't give a flying fuck about their children, or are trying to prostitute them or traffic them, And where some parents are well-meaning but too fucked up by drugs or booze or mental illness to be able to provide good care.

GIllick competence is crucial to the protection of young people. Fortunately, the Bell judgement is entirely consistent with it.

With so many questions and problems hanging over puberty blockers and the threat of litigation I don't see many sensible clinicians queuing up to be on a hat panel

That panel

I can't get my head round Tavistock saying in court that they would never just rely on parental consent - and only a few months later they are proposing to do just that. The only thing that has changed is they lost the case where they made that statement! How is that not comtempt of court?

www.bbc.co.uk/news/uk-56764393.amp

extract from BBC article linked above:

"NHS England said its new processes were being introduced on an "interim basis" while it awaits the outcome of a review into gender identity services.

It said it had "carefully reviewed" the parental consent judgement from March along with "significant concerns" raised by a recent Care Quality Commission report about the clinic and a puberty blockers evidence review by the National Institute for Health and Care Excellence.

The health body said that while parental consent had not been "historically" relied on it may be for existing patients who are already being prescribed puberty blockers."

In such cases there would need to be "full agreement" between the child, parent(s) and clinical team as well as support from the new review group.

It added that, should the review group have doubts about whether the decision-making process was "robust", a best interests decision could still be sought from court." (continues)

There is some more detailed info about the appeal judgements here:

www.familylawweek.co.uk/site.aspx?i=ed220223

WHY can this group not be told "no"?

There is no evidence of benefit. There is evidence of harm. No other patient group gets to dictate the terms of their treatment.

What happened to "first do no harm"? Why is no one prepared to say "no, we made a mistake, the science doesn't support the protocols we just made up, we don't want to harm you, so, no, sorry, but no. Here is support and help for your comorbidites, but, no"

@Tibtom

I can't get my head round Tavistock saying in court that they would never just rely on parental consent - and only a few months later they are proposing to do just that. The only thing that has changed is they lost the case where they made that statement! How is that not comtempt of court?

Quite a turn around isn't it. They said they couldn't forsee a situation where they would do it without the patient's consent. I suppose thet would say an unforseen situation has now arisen - that one court has ruled children cannot consent to it, and another has ruled that parents can consent to it - so they are changing to parental consent plus child assent. But it does suggest a rather 'fluid' set of ethical principles that shift to the circumstances.

It sounds like the new review group will go through all of the current patients before moving on to new referrals, and at some point Cass's recommendations will supercede this system.

It does give some reassurance to a parent who does not want the medical route for their child, even if the child is totally convinced, because any disagreement about the best way forward should result in a referral to the court.

That may well be the position in the near future.

The Bell vs Tavistock is in June and the Cass Review will be key.
In the meantime children who have already gone through an NHS assessment process and started this experimental protocol need to be carefully reviewed and well supported.

The obvious main risk to those children if NHS said an abrupt, 'no!' would be the unregulated online clinic and parents taking children overseas.

The obvious main risk to those children if NHS said an abrupt, 'no!' would be the unregulated online clinic and parents taking children overseas.

Such a difficult area. More widely, when a medication is not authorised in the UK, it's not unknown for a parent to take a child overseas to initiate the medication. NHS clinicians may then be in the position of needing to monitor that child while they are receiving medication that doesn't have a marketing authorisation in whichever part of the 4 nations healthcare system somebody is in.

It's not unknown for it to happen that a parent will do this, and then there is a later marketing authorisation and a positive recommendation from NICE - so in such cases, the parent acted in line with their best belief for their child. (I'm not talking about experimental or unevidenced protocols, I mean that there is trial data, possibly still at an early phase II trial or a phase III with only interim results, and treatment with it is available in some countries.)

I'm loth to see a hard stop on using NHS resources to support parents who do this for their children particularly where this is for one of the devastating childhood conditions that has a catastrophic impact on a child's survival and/or quality of life. I see this group as entirely different to the ones discussed here. I'm aware that some would argue that they're equivalent.

It's probably a good sign that tax law's prat-in-chief is disappointed, and so are those replying to his tweets. They point out that there's no requirement for someone with a gender health care background on the review group. It only stipulates other areas of expertise. Obviously the child's clinicians will be if that background, but I think it's a good sign that they are making other backgrounds a priority for the review boards. Maybe it will bring in more mainstream approaches & will open up what's going on to general paediatric medicine, rather than only seeing things through the framework of gender medicine which seems to have been operating like an enclave with its own version of medical ethics.

The qc does say glp are looking at whether to bring a judicial review of this policy too! So the NHS could find they have to defend this in court.

@WallaceinAnderland

As a parent, I think that would give me the confidence to say to the child and professionals that I was not comfortable making such a decision for my child and would rather wait until they were 18 and able to make decisions for themselves. That would completely obsolete the use of puberty blockers and the potential harm in future years.

Can’t sixteen year olds still consent, in theory? Wasn’t the judgement that those under sixteen were unlikely to be able to consent, but that though clinicians might want to seek extra backing from the courts with regard to sixteen year olds in cases where there was doubt, there was no outright statement as there was with the younger children?

Wasn’t the judgement that those under sixteen were unlikely to be able to consent, but that though clinicians might want to seek extra backing from the courts with regard to sixteen year olds in cases where there was doubt

It would still help the parent. They can say that they don't give consent and would like the court to make the decision if that's what they want.

Imagine being a parent and having absolutely no say in whether your child will be given drugs that will affect them for life. At least this gives parents the right to object.

@WallaceinAnderland

Wasn’t the judgement that those under sixteen were unlikely to be able to consent, but that though clinicians might want to seek extra backing from the courts with regard to sixteen year olds in cases where there was doubt

It would still help the parent. They can say that they don't give consent and would like the court to make the decision if that's what they want.

Imagine being a parent and having absolutely no say in whether your child will be given drugs that will affect them for life. At least this gives parents the right to object.

Yes, that is a positive for parents of children who don’t feel this pathway is appropriate at least. As usual, the least protected children remain at highest risk.