NHS gagging order on 19 year old with mitochondrial disease.

[AbbeyGailsParty]

The girl cannot be identified. Canjot identify the hospital she is in. Cannot make decisions about her own medical treatment. Neither she or her family can fund raise for alternative treatment in Canada or USA.
Unless I’m really missing something, she sounds perfectly reasonable and rational. Wtf is going on? Atm this is the only link I’ve found.
https://www.mirror.co.uk/news/uk-news/i-fight-doctors-who-say-30900078

It's not about not wanting to die, it's about the fact she is going to. And that can be done with dignity and no pain, or it can be half naked, surrounded by an arrest team being shocked, having drugs pumped in to her and no chance to say goodbye to her family

Exactly, sashh - and if (god forbid) something like this happened, to some that would all be the medics' fault too

That's not actually true I used to be a mental health nurse when somebody is assessed under the mental capacity act they can be found to have capacity in some areas but not others
What this poor girl is going through is horrific particularly in view of her age its no wonder she's not accepting what the doctors are telling her ,and that's what they have assessed her on .

She may have beaten the odds in the past but that's not happening now.

Does she have capacity? As someone (more than one I think) has said you can have capacity in some areas but not others.

Towards the end of my grandmother's life she was in a care home, she could say yes to a cup of tea or choices between fish or beef for lunch but she didn't know who I was.

Not true. You can have mental capacity for some purposes but not others - for example, you may have the capacity to look after yourself day to day but not to deal with your finances. Also, unsurprisingly, for some people mental capacity fluctuates. In this case, the finding was that the patient does not have mental capacity in relation to specific issues.

Mental capacity (which we are talking about here) is utterly different from the Mental Health Act, which is about ‘sectioning’

You are not ‘sectioned’ if you lack capacity. instead you are treated in your ‘best interest’

You are sectioned if you have a serious mental condition that is a risk to yourself or others if not treated.

I wish people would read the fecking ruling before making ignorant comments on here. It’s been linked on nearly every page, I’ve linked it 3 times already so perhaps someone else can do it for our uncomprehending posters this time.

This, 100%

https://www.bailii.org/ew/cases/EWCOP/2023/40.html

Just in case people are unable to find it here's another link to the ruling.

@12moose

"
Second of all, and something people here don't seem to understand the importance of, SHE HAS BEEN ASSESSED BY TWO PSYCHOLOGISTS AS HAVING MENTAL CAPACITY. This is crucial and the whole reason the Mental Capacity Act exists.

She has capacity. She wants to live. And she should have the right to do all she can to try and live, especially if she wants to try and raise the funds herself.

I have many relatives who are social workers and it's their job to carry out mental capacity (or deprivation of liberty) assessments, and they have a lot to do with the court of protection. And they all say this stinks."

Have you read the ruling? She has been assessed as not having functional capacity as she does not accept the medical reality that she is going to die.

It’s very easy to tell which posters have read the ruling and which ones haven’t. This is how we got Brexit, people believing the shit they read in tabloids.

Some of us read the ruling but had a different view. Presumably this is allowed on a public forum?

The ruling deals with facts, and it's difficult to see how there can be differing opinions when we're dealing with facts.

@sep135 what is it that you don't agree with? Or don't believe to be true?

My question was over her unwillingness to accept death being taken as evidence that she lacks capacity by the judge. In other aspects of her illness and care, she was deemed to have the necessary capacity.

While it's easy to say we'd accept death gracefully, I suspect that I'd also be trying everything if I were in her shoes. Or it was my child lying there.

I believe that the NHS has the right to withdraw treatment and her doctors have given good reasons for their recommendations.

The ruling also makes reference to a timescale for finding alternative treatment (from memory, said by one of her doctors). If she could organise transport and treatment within 3 or 4 months, then I'd see that as a reasonable compromise.

It seems highly unlikely that this would be a feasible option but it gives her the choice. I accept she would probably not survive but, provided she knows the odds and consequences, that would then be up to her and her family to decide.

I have read the other posts and appreciate the reality of her illness and her odds of survival.

The ruling deals with facts, and it's difficult to see how there can be differing opinions when we're dealing with facts.

The ruling was also based on the views of various medical professionals. They may be well-evidenced and professional opinions but they're not facts either.

Nobody is trying to stop her seeking or receiving treatment elsewhere, it’s just that there are currently no trials for her particular form of mitochondrial disease. And even if there were, it would not get her off the ventilator or haemodialysis, because she is in advanced renal and respiratory failure, and not because of long Covid, as she believes. She and her family seem to believe a mythical trial will somehow fix those things, when she is already receiving the maximum medical support/treatment for her failed organs.

I’ve already said upthread that denial can be a wonderful coping mechanism, and I have every sympathy with her, but she and her family are deluded about her prospects, which makes meaningful conversations about her end of life care impossible, and very difficult for those involved in her treatment and care.

Exactly.

I have read the judgement.
It does not automatically mean I agree with its conclusions.

I agree with your comments. I'm simply saying if she manages to find alternative treatment elsewhere, which is extremely unlikely, should she not be given that choice? Provided there is no burden on the NHS.

If she somehow finds some form of treatment (and none is currently available) she still has to surmount the insurmountable, i.e. that she is in end-stage respiratory and renal failure.

We're really back to saying, yet again, that ST would not survive even a journey to an airport, never mind a journey across the Atlantic.

And there would inevitably be a burden on the NHS because no private facility would dream of trying to undertake the transfer of a ventilator-dependent patient who also required renal dialysis.

How would that fit with the Hippocratic oath and doing no harm when moving her would kill her?

That's my point though. If she can't arrange private transport from the hospital onwards, it's fair enough for the NHS to refuse it.

It would perhaps be possible to transfer her abroad, there are private providers of ICU transport/flights, and the army has experience of transferring critically ill soldiers. But for what, precisely? She is currently receiving all her care and treatment “for free” on the NHS, and would need to raise multi-millions to pay for the same care in e.g. Canada or the US. And there are no current clinical trials anywhere in the world that she’s eligible for anyway. It’s a pipe dream and it’s hampering ST and her family’s ability to come to terms with her terminal illness.

the army has experience of transferring critically ill soldiers

This is acknowledged in the judgment, and the doctors looking after have experience of this.

They still say she is too unwell.

Oh yes, I was #JustSaying.