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

Amen!! It’s ridiculous!

Fortunately I live in a blue state where women’s rights are protected.

And of course, in a case like this one, it would be the insurance company in court fighting not to have to pay any more for her care, and ultimately this young woman would become responsible for the cost herself and would end up bankrupt.

Not really. Have you read the judgment? She displays no understanding of her condition and its prognosis.

That's not what happened, the tabloids made it up.

What actually happened was parents kidnapped a little boy who was very unwell with a brain tumour but was receiving excellent treatment on the NHS and had been given an 80% chance of survival, because they didn't want their child receiving chemotherapy. They claimed the reason they didn't want their child having chemo was because they were worried about side effects, but the parents were also Jehovah's Witnesses and there was speculation their religious beliefs were a factor in not wanting their child to receive chemo. Doctors reported that the parents hadn't allowed or had delayed their son from having routine tests and procedures, for example when he first became unwell they tried to prevent him from having a spinal tap. When his brain started to fill with fluid, they tried to prevent doctors from implanting a shunt to drain the fluid.

The parents were so desperate for their son to not receive chemo (even though doctors had estimated chemo would give him an 80% survival rate), they decided to kidnap him and take him abroad, ostensibly to receive proton treatment which they wrongly believed had fewer side effects. At that time the NHS had funded certain patients to receive proton therapy abroad but only in cases where there was medical evidence that proton therapy would be more effective than chemo.

Doctors in this specific case felt that proton therapy wouldn't be more effective than chemo and that stopping chemo would harm him. However, they were willing to put the parent's wishes first, so the hospital in the UK started to liaise with a hospital abroad to make plans for him to be taken abroad for proton treatment. So he WAS going to be given the treatment the parents claim they wanted, even though the doctors felt it was unwise.

Then the parents just kidnapped him and ran off with him (for no reason, since the NHS had already made clear they would support him going abroad for proton treatment) and when he was found they were hiding with him in a hotel having dragged him across multiple countries. In other words, they didn't take him abroad and take him straight to a hospital to start proton treatment. They just hid in a hotel. They also didn't bother to learn how to use his feeding tube.

The parents very nearly killed him by taking him off chemo and away from hospital care, and there's no evidence they actually planned to take him to a hospital abroad. By all accounts they didn't want him receiving any medical care at all. Their action in kidnapping him made his condition much worse.

The only reason he's still alive is because police found and rescued him and he was rushed back to hospital, and doctors had to step in and battle to save him from the extra damage caused by the parents carting him around Europe, causing him to miss chemo, and hiding him in random hotels when he should have been in hospital.

The parents actively harmed their child and their actions in kidnapping him reduced his chance of survival. An independent review found that the parents' actions had reduced his chance of survival by 30%.

He's alive in spite of their actions, not because of it.

And it's not a comparable case, since he was never terminally ill, the disagreement over treatment was over side effects not survival, and the parents not wanting their kid to receive chemo, and there's evidence that due to their religious beliefs they didn't want their child having any kind of medical treatment.

@CCTVcity and what about the trauma suffered by those tasked with accompanying her to Canada? Death of a patient in an operating theatre is rare and devastating, at least there the staff have the comfort of knowing the patient was unconscious and unaware. This would not be the case in this scenario. Because of her tracheostomy the doctor would need to be airway trained so most likely an anaesthetist.

But neither this patient nor many at the point of being told they are terminal are at that state. According the documents, she isn't even on any major pain medications and she is still communicating her desires and feelings.

Certinaly there are many people who wish to die and there are even MAiD programs to assist in that. No one should need to live longer than they wish to assuming they are competent. However in this case, her death is imminent according to the experts. She is not heavily medicated for pain, she is saying she isn't suffering, she is still communicating and if she wishes to live out her days in the state she is in, why should dialysis be stopped? Many people are kept alive by dialysis and would die if it is was stopped - yet we provde that medical and life saving internvention to those who wish to keep living. If she was in intense suffering or no longer aware of her surroundings, that would be a very different scenario from the one described in the court papers where everyone who met with her encountered a very articulate and still very thoughtful young woman.

Im.very sorry about your nephew and I hope he recovers but its been explains several.times on this thread that Aysha,kings parents didn't save his life and actually put him st risk.

In case you were too busy to read the post two posts above you;

'The parents actively harmed their child and their actions in kidnapping him reduced his chance of survival. An independent review found that the parents' actions had reduced his chance of survival by 30%.

He's alive in spite of their actions, not because of it.'

Whilst what has happened to the people youve mentioned is awful, the fact that we have an NHS where treatment is free at the point of need is something that has ensured millions of people’s lives are saved every year.
My life was saved when my appendix ruptured and I got sepsis. It was saved again when I needed 7 units of blood after giving birth. It saved my father’s life when hi had a ruptured aortic aneurism.
If you live in a country where they do not have such a system, your life chances are far worse unless you're rich enough to pay.

If you read the expert opinion of Dr C (Starting at paragraph 44) someone who was not involved in her care but came in as an extrenal consultant - he comes to a very different conclusion and has a very different view of her than those who have been involved in her care and are clearly tired. Her family has been there every day which is a strain on the team, she is taking up a bed when she won't recover, she is still wanting agency and many doctors like ot have control and like patients who just do as they are told. Health care professionals are human and they make a lot of mistakes and have a lot of biases.

Even those caring for conclude they have been very wrong on her prognosis so far. They documented months ago that she would die imminently and should have all life saving measures stopped. For those saying they don't want her dead - it is pretty clear in the documentation that they wanted her gone months ago and wanted to stop everything back in the winter / spring. She would be dead if she and her family hadn't ketp fighting the system to allow her to live the last six months. To them, having this time is something they want.

Correct me if wrong but she has only been ventilated in the ITU since December. It hasn't even been a full year and by Feb, they were talking about withdrawing life saving measures so she would die. That isn't much time. I get people have very different feeling about who should decide when someone's life no longer has value and who should decide who dies when - I don't have as much faith in some that doctors are god and should be given that power, nor that they are always right.

Would you have been fine with the NHS deciding not to provide those life saving measures? If they felt the resource and risk outweighed the benefits and that the resources could be better used elsewhere or that you might not live even with treatment so no point in providing treatment and better to let you go without any more suffering?

Whilst what has happened to the people youve mentioned is awful, the fact that we have an NHS where treatment is free at the point of need is something that has ensured millions of people’s lives are saved every year.

Thats also pretty standard in developed countries and isn’t a reason fur not questioning some practices or indeed some doctors.
And tte fact the NHS is saving many life’s doesn’t mean it’s always getting things right and we should simply ‘forget’ or ignore when it doesn’t.

I support the NHS as a whole but the beaurocrates, managers & others (Inc some staff) are too bias to act in the best interests of their patients. Mostly good experience but some are too concerned by statistics than improving life....
eg1"I can't operate as there is such a low chance of survival😳"

In this case they say the girl is actively dying
We're all actively dying.... what's that even mean....days to live lasting ...what days are they meaning Uranus'.
Cover-ups are generally dodgy
Only free to speak if you agree with us is a very dodgy wicket.

Watched a programme recently called Geordie Hospital (I think)....an insight into the difference between a great consultant and a heads down (great stats) one.

Sorry but that’s their job.
And yes being a doctor can be traumatic but no decision should be taken on the basis of ‘how much burden is there in the doctor’
Decisions like this should be about the patient choice and them taking informed decisions.

See, this is where I'm struggling with the judgement. I've read the full judgement (thanks to the PP who shared the link).

They've acknowledged that she's intelligent, informed and coherent, and they agree that she's not delusional.

It appears that the full basis for finding her incapable is that she's unwilling to consider the fact that she's definitely going to die. I think the quote from her was "I want to die trying to live". The judgement also says that she acknowledges the chances of success are slim.

I've known various people - family and friends - who have died. Everyone approaches it differently. Some accept their fate with as much peace as they can, they don't fight the inevitable. Others refused to accept the fact they were dying right up to their very last conscious breath. For them, discussing and agreeing a palliative care plan would have been "giving up". They believed that maybe, if they just held on for long enough, somehow by sheer will they'd be able to eke out a longer lifespan.

Surely that's the case here? I don't understand why her refusal to acknowledge her imminent demise makes her incapable. It's a common coping mechanism for people who are staring death in the face. There are plenty of people who won't discuss palliative treatment, and just want to fight on for as long as they can.

The other thing that's being held against her is her belief that she has Long COVID and it's this which has exacerbated her symptoms. Again, there are thousands of people in this country who believe that they're suffering the effect of Long Covid. Doesn't make them incapable or irrational. We don't know much about Covid still, but we do know that it seems to take its toll on the whole body and in some, the effects can linger or possibly even cause permanent damage.

I don't understand why she's being held to a higher standard than anyone else.

How much the NHS should support her wishes is another argument - but this judgement was about how capable she is. I mean, very clearly this Canadian treatment is not going to help someone in such an advanced stage of this condition, but I understand how and why someone might refuse to give up. It doesn't make them incapable. It makes them scared of dying. This judgement was only about whether she's capable, not whether the NHS should continue treating her.

The decisions about what treatment the NHS should support are much more nuanced, imo. But having read the judgement, I can't see why refusing to accept imminent death - especially when your doctors have been wrong, twice - makes you incapable.

I'm not sure what I'm missing here?

You mean the case that several people on this thread have given the facts for? As in his parents took him abroad and kept him in a hotel rather than seeking out to continue the urgent care he needed? So further damaging his health when the hospital was prepared to arrange the treatment they wanted? That case?

Read the fucking thread before commenting.

I am sorry about your nephew though, I hope he is as well as he can be now.

You're missing that she has zero understanding of the severity of her condition and a fixed belief that this non existen Canadian treatment would give her a 50% chance of long term life and zero understanding of the medical impossibility of getting there.

Spidersareshitheads I completely agree and had the same view after reading the ruling. I suspect I'd be in the fighting until the very end camp, delusional or otherwise. I had a friend who died from cancer a few years ago and she took an entirely different approach. Her gracefulness and acceptance of her fate in the face of leaving two young kids without their mum was extremely humbling.

I appreciate why the NHS can't be expected to condone her choice given the odds. But, if (and it's a big if) she's accepted onto a trial and able to provide medical staff to oversee the transfer, then I think there's arguably a case for accepting her wishes.

There is also reference to her doctors wanting a set deadline for her to find and be accepted onto a scheme. That also seems reasonable in the circumstances.

If you read Dr C's testimony, that is not an accurate depiction of her position or beliefs at all.

That is literally the exact opposite of what happened. He was receiving excellent medical care for a very treatable cancer (and had an 80% chance of surviving), they refused him medical treatment because they were Jehovah's Witnesses and didn't want him having chemo or other medical treatments, kidnapped him and ran off to hide in some random hotel.

Their actions very nearly killed him, left him with longterm serious health problems, and their actions reduced his chance of survival from 80% to just 50%. He is actively suffering to this day and has an increased chance of his cancer coming back, all because they didn't want him having chemo.

His parents did zilch to "save his life." They nearly killed him. The only reason they didn't kill him is because police found and rescued him and brought him back to hospital. He would be dead if the parents had had their way.

It says she's in an intensive care unit which is very odd given they have given her days to live but she is talking and studying. Those beds are very few and far between especially since covid. Definitely more to this. I'm wondering if the parents are behind it

She isn't talking or studying.

She was studying, she isn’t now. She is communicating but it seems that’s via eye gaze technology rather than actually talking.

He wasn't the only doctor who saw her and seemed to be somewhat of an outlier. She and her family are pretty clear that God is going to get her better and it's pretty tricky to rebut that sort of view - I have tried as a professional - it doesn't end well.