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

What confused me about the article is that both parents and child seem to think the treatment consists of being given an oral medication that replaces what her body can't make. If it was that easy then , why does she have to go to North America,why can't the medication be given here? and ,if it is that easy, why aren't the NHS doing it? It's why it makes no sense to me.

It's heartbreaking and cruel for the family and this young lady
I can understand at such a young age the want and need to live and being unable to accept the situation.
On the other hand from an outsider we are all going to die some day and some of us tragically before old age . We don't do death well in this country. We are frightened of it and in this case it's about dying in the best way possible without causing more suffering which moving her would.

Transporting or rather trying to transport someone in such a fragile state where it would with almost certainty cause her death would be cruel to the people forced to help her in that process.
It would even more harrowing and distressing.

It's all very sad, tragic even but she won't make it anywhere, probably not even to hospice care.

Any order restricting reporting will have come from the judge - not the medical team.

The sad reality is that she is dying and being kept alive only by all the skills and resources of ITU, but this will be only temporary. At this point there is nothing that can reverse her illness.
Moving ITU patients is a really complex and high risk activity, even within the hospital. A plane transfer is on another level. There is a high chance she would not survive the journey, even with all the support in the world. That would be far less pleasant for everyone than palliative care in the ITU or a hospice

DOI - anaesthetist who has covered ITU in the past

She relies on regular dialysis, is fed by a tube, and is bound to a ventilator that helps her breathe
Ok completely get why Canada is a no go. But it also says they want to withdraw the treatment she's currently having which will result in her death.
Can anyone correct me if I'm wrong but it seems immoral and should be illegal to take treatment away from someone who can actually say they want it of its keeping her alive and she doesn't want to die. Even if that life isn't a typical teenager life.

I agree with this, delusional or not, if she can clearly communicate her wishes they should be respected. The NHS should not be forcing the removal of life saving intervention for a person who is fully conscious. The nature of science is that it’s always evolving, there is more to learn, and despite being very knowledgeable doctors do not know everything. Once they’ve advised her of their expert opinions it is up to her to decide. We can’t always assume squashing ever glimmer of hope is in everyone’s best interest.

I think it’s different if the decision means the health of another person is at risk.

Where do you think she's going to get all the doctors and nurses from to get her to Canada on a ventilator and dialysis machine?

There's no time for her to start fundraising because she is dying now. And she wants to live, so yes it's not fair, it's a tragedy.

The truth is that the nhs cannot afford to keep dying people on ventilation indefinitely whilst they hope for a cure. Every day she is in that bed other people are dying without it. That's not "fair" either.

Being on a treatment already has no bearing on your right to continue that treatment at the point at which it becomes futile and/or harmful.

If for example, I keep having arrests and receive CPR whilst the medical team investigate possible reversible causes for my clinical condition - that's fair enough. But if they definitely conclude that there is nothing reversible, I will continue to have arrests until at some point resuscitation fails and I die... Then the treatment has become futile and probably harmful (injurious, causing pain, lacking dignity etc). As this point, medical professionals do not have to provide a treatment which is harmful or futile. Anymore than if a patient demanded they do something non-medical that was horrible and pointless, would they have to do it.

It's not just arrests. It could be constantly being re tubed. It could be continuing dialysis with all of the associated complications related to access etc. It could be having surgeries to try to address a problem that it turns out, can't be fixed that way. Etc

The issue there is NHS funding though, not her personal wishes. FWIW, I can totally see why the plan to travel to Canada is a non-starter, but I don't think she should have dialysis withdrawn (which from the court judgement seems to be part of what the hospital want to do) because "someone else needs the bed more".

I do think part of this is around the idea of "no quality of life" and "a good death", which does concern me.

"she should be allowed" doesn't mean discharging her and waving her off to Canada tho, it requires a long haul flight for someone medically fragile on a ventilator and requiring dialysis. It requires round the clock medical care by numerous professionals and a suitable method of transport.

The difference between her case and Archie and Charlie Guard is that she is clearly not yet brain stem dead! If the machines stay on, she, in her own right enjoys a quality of life that to her is worth living. If she slips into a coma then the time to make decisions about het care has come. She is not in a coma and is not asking to.be placed in one. Her wishes should be respected.

@Badsox so you think everyone should be allowed unlimited nhs treatment on the NHS until brainstem dead? Fair play to you but that is not what happens now and you are going to have to quadruple the budget. And if you don't, intensive care beds are going to become unavailable very quickly.

Apologies if this has been asked, not in the UK so unsure how it works but the doctors seem to be suggesting withdrawing the life support treatment? Why is this? Is it due to funding? Surely not. Why can't they continue providing these treatments, it won't cure her but it will give her time, maybe only days or weeks but it could be longer. Yes she may die while receiving these supports but you can't say sorry there's nothing more we can do, we're stopping the dialysis and whichever supports the person is on.

Also why can't the family privately fundraise? Again if they could pay privately to continue these treament/life supports then surely that is allowed. I can't understand why it's gone to court. Surely the family just say they will be switching to private health care. Then the private hospital would arrange to transfer you there. All paid for by the family of course.
This is how it would work where I am and I'd imagine if you told any private hospital that you would pay them to continue these supports then I can't see them saying no. There getting paid. Can the family not transfer her to private care?

Nothing has yet been decided as to whether ST can be treated, where when or how. There will have to be further argument about that and whether, like with Charlie Gard, she should be allowed to die or somehow moved across the Atlantic to the US or Canada for treatment the precise nature etc of which is not yet known.

As Roberts J makes clear at para 105 future medical treatment must remain a matter for a Tier 3 judge sitting in the Court of Protection.

What's has been decided so far is that whatever support is provided ST has not got the capacity to take part in that litigation herself; she will need a Litigation Friend to instruct lawyers etc. It's worth quoting in full what Roberts J said in summary:

Despite the view of Dr C and the position urged on me by Mr Garrido KC and Mr Quintavalle, I am satisfied that this is a case where ST lacks capacity to litigate without the assistance of a litigation friend. Capacity to litigate includes not only an understanding of the issues in the case but an ability to understand, use and weigh the arguments on the evidence so as to give instructions in relation to the arguments of other parties who may take an opposing position. Given my findings in relation to subject matter capacity, it is difficult to conceive of circumstances where ST might be said to have full litigation capacity but lack subject matter capacity. I am concerned about the lack of information in which Mr Foster of Moore & Barlow came to be instructed and whether the origin of that instruction was ST herself or her family. I offer no criticism of their involvement in this hearing. They attended at the invitation of the court in order that the court might have the benefit of full argument. In that respect, the attendance of Mr Garrido KC and Mr Quintavalle at this hearing has been of considerable assistance to the court.

I'm afraid my personal take, over many years of observing these sort of cases is that anything like this involving the Christian Legal Centre and Mr Quintavalle is extremely unlikely to benefit those they advocate for...

It's not just the cost of getting her to Canada it's also the cost of keeping her there. And her family. Which means that they won't be here earning, paying their bills, and when she does die, they then have the expense, perhaps, of bringing her remains back, trying to re-establish their lives.

It's a cold and callous thing to talk about money when we want to talk about extending her life. But reality is that things don't happen without money and, in this situation, it would take a massive amount. Ok people can fund raise. But can they get the amount needed? And can they predict that amount?? £10k a day for her to be in ICU? Or? £100k for the flight? £2k a week for hotel for parents? Oh let's say it's a straight £1million to get started.

Eventually the parents return to the UK, broke and unemployed. Declare bankruptcy. All while grieving.

Not going to happen.

As always in these cases, you only get one side, the hospital cannot comment, whereas the patient and their family can say whatever they like without contradiction.

they will be switching to private health care.

There is no private ITU care in the UK. Let alone life support.

Did you read the article?

She's on life support. She's on dialysis and on a ventilator.

If that life support is withdrawn, she will die.

@AbbeyGailsParty there’s already at least 1 whole thread on this

@aravae yes funding but also ethical considerations. Doctors are allowed to withdraw treatment from dying patients. I've seen no suggestion from the family about transferring to a private facility, probably because of the money involved.

I don’t quite understand why they want to withdraw treatment. They say her death is imminent and as of early Aug the ICU specialist felt she had at most a month to live (although that would mean she would now be dead if his prognosis was right). I don’t see why they need to withdraw dialysis or refuse her further lifesaving treatment. Is it too expensive so they want her dead as quickly as possible?

given she is conscious, alert, and communicating that she wants to live as long as possible - why not let her? If the disease is as progressive as the experts testified and she is in the final days a death is imminent, why not let her keep fighting until the end. It would be terrifying to hear the doctors wanted to drug you to sleep so you will die quicker when you are conscious and alert.

Some people live on ventilators for years. She has only been on it for a year so I don’t get the urgency in stopping her dialysis and refusing her antibiotics and wanting her on high dose opioids against her will.

There is a wide range of expert views and positions in the court document. There isn’t even consensus. Obviously she isn’t going to travel anywhere but I don’t get the desire to have her dead as soon as possible when her death according to the experts will happen any day now.

It is sad reading this. She's been led to think it's long Covid that's affecting things like her brain stem. It is apparent from the conversations her doctors have tried to have with her how much they do care about her dignity and free will.

I know that the court intends to protect the patient's best interests – especially with 3rd parties with their own agenda. But sometimes I think they should just allow deceptive misleading fundraising, and then let some private medical racket (though, the poor staff) have at it.

Don't mean for this to sound heartless but after a few times of the patient dying just seconds out of the hospital ICU carpark, or dying in some quack hospital in the Promised Land of America, people will start waking up to reality. And if there is somehow some kind of Jesus revival like miracle somewhere along the way, then well that's great news too.

Yep this

The article I read said there was no known treatment options, the USA doesn't have any available even. She's been in itu for a year, it's not a simple situation