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

I believe Peter Kay has a child with this. He has raised a lot of money for research.

But there isn’t an alternative treatment.

doctors would be doing her a disservice if they let her believe she could survive the journey let alone take part in a trial that isn’t active at the moment. Giving people false hope isn’t going to achieve anything.

Sad situation but she's not being 'gagged' otherwise we wouldn't know about it.

She's only being kept alive by medical intervention so intrusive and intensive that she couldn't travel even if there is a unicorn treatment available on another continent that might in a tiny amount of cases do something but no evidence to really suggest a cure.

Treatment isn't being offered abroad though. And she cannot physically get there even if it were.

She’s got the same illness that Charlie Gard had. It’s incurable. I feel very sorry for her but, regardless of whether she faces it or not, the reality is that she’s going to die.

I know a medical professional who was involved in one of the high profile cases. He felt scared every time he walked into the hospital. He faced threats when out in local town. Years down the line he is still effected not only by the tragic loss of a child in his care but by the damage done to him and his colleagues by the “army” of people doing nothing but feeding false hope.

THATS why details need to be kept out of the public domain because it helps nobody. Most importantly it doesn’t help the family in the long run, when the poor girl sadly does die they will release a few balloons make a fuss and then find the next bandwagon forgetting about the family who at that point do need support.

@FOffULEZ

3 hospitals in Canada have said they will have her. The trial is having funding issues at the moment but that might not be the case once she has fundraised. Why the gagging order if they are being squeaky clean?

If she is conscious and able to communicate, then she should have the right to be ridiculous. That doesn’t mean she can expect the nhs to pay for unrealistic care. However, it is unfair to say she can’t try to find a miracle somewhere.

She may be irrational, but unless harming others, people are generally allowed to be irrational. Might she harm herself in the process? Yes, but realistically, she is dying imminently. This should be about the lesser evil, the importance of allowing a person free will vs the chance of that person creating a worse outcome for themselves.

Exactly

It is not a gagging order but a transparency order.

@Sirzy

That money doesn't just fall from the sky. It might not be paused by the time she raises it. It is paused now but it might not have been paused at the time the order was applied.

Can this type of condition suddenly happen? I thought it was evident soon after birth and progressed quickly ? Has she always been seriously ill or was it late onset ?

According to the article she started displaying symptoms when she was four.

Thanks for the link @countbackfromten - a hard read. I hope everyone on the thread will read it.

This.

She might be on a hiding to nothing but she’s entitled to make her own decisions even if we don’t agree with them. We don’t force drug users into rehab even though it’s likely they aren’t making rational choices. Her quality of life may be poor but it’s not for us to say that she shouldn’t want to live.

And to be honest I can see why she doesn’t necessarily believe what they are telling her. They keep saying that she is going to die imminently and she’s still here.

It's absolutely heartbreaking, she's 19! Of course she wants to try everything possible to stay alive. While I understand the decisions being made by her medical team, I don't think many people could imagine how she's feeling right now

Because her family need money for the treatment so they have made it a high profile case hoping to get people to donate money. That entails all the fiasco that goes with it so the judge has made a gagging order. It’s not fun to turn up for work each day to reporters and do gooders parading around outside the hospital, trying to get the story or their opinion across. It was bad enough when we had Nick Knowles and his team walking around with cameras for that hospital programme that was on every day!

To me that makes it all the more important she is protected to ensure she isn’t taken advantage of to help fund these trials.

This is why we have judges. So they can hear all the evidence and make a dispassionate yet humane decision. And if a party disagrees with it, they can seek leave to appeal it to a panel of sensible, humane judges and make their arguments again.

The public doesn’t have all the evidence. Any opinion formed out of reading an article or two is necessarily ill-founded.

Quite

Hopefully the gagging order will prevent another Charlie Gard/Archie Battersbee situation - or at least it will unless some idiot breaks it and then we'll doubtless have another circus

Hopefully too these heartbreaking decisions can continue to be made by those who actually know what's going on, without distractions from those who just think they do

To not allow her to go abroad due to the poor state of her health is one thing, but to fill someone who is telling the team she wants to live for as long as she can with morphine to actively bring on her death when she can still be kept alive and have some degree of lucidity is morally wrong. She is telling the medical team she wants to live for as long as she can and should be given that right. She may be delusional about how long she has to live but she is alive and communicating and that should be respected. If someone is ventilated but clearly communicating they are not brain dead.

They keep saying that she is going to die imminently and she’s still here.

That’s because she’s on life support. If they removed it - as they want to because her chance of recovery is zilch - she’d die.

Saddens me to say it but this is what the future looks like. Once they get euthanasia legalised in Britain people will be bumped off by the health services in their droves.

No financial benefit to the state? No value. Appalling.

She's doesn't want to die! That is so sad. What's wrong with letting her go to Canada and seeing that nothing is there?

Or is it a case of once one person goes abroad for treatment for one of these conditions that in future these court cases will be harder for the nhs to win so they don’t want a precedent set? Even if the treatment doesn’t save her but prolongs her life or offers some improvement of symptoms It then raises questions and ethical issues ? It reminds me of a case where parents took their child abroad for some kind of beam therapy for a brain problem and the nhs/U.K. authorities were trying to get them back here and accusing the parents of abducting the child but the treatment was successful? And now is offered to others