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

They have been respected.

They have been listened to in a court of law.

What you are saying her decisions should be paramount, even when she does not have the capacity to understand that doing what she wants would not result in a positive outcome - it would in fact likely kill her.

Nobody has the right to expect medical staff to participate in treatment that is not in the best interests of the patient even if that is what they want.

I don't know how many times people need to point out that the clinical trial in Canada has been suspended.

Even if she could get there (she can't - she's too poorly) there's no treatment for her in Canada that would make her better.

Sadly her body is failing from this cruel incurable disease and there is a limit on how long even ITU care can sustain her.

I don't think people understand how invasive being ventilated is or the toll dialysis takes on your body.

I'm guessing if the NHS allows this girl to go abroad to have this treatment (which treatment, by the way?) - they will have to withdraw responsibility for her care? Legally, I don't think they can - because she is on the ventilator and will die without it.
Has this ever been done before?

The private sector doesn’t have those facilities. They don’t exist outside the NHS.

Not sure of the difference between ICU and ITU but is this the same? (It's a hospital in London I recently had surgery at).

"At the Princess Grace we are set up to deliver enhanced patient care and the hospital benefits from a state-of-the-art Intensive Care Unit, with an integrated High-Dependency Unit and a ward level Critical Care Outreach Team, for those patients who require extra monitoring in a traditional ward setting."

I think the Wellington hospital has similar. Although I suspect that's more post surgery, I very much doubt they'd accept a long term patient in her circumstances.

She will have to pay for a private team to go with her, there are companies that transport patients between places, they are really expensive, but they also bring patients back to the uk after medical is so yes abroad and insurance pays. They have all the equipment a patient may need as well.

Spire healthcare hospitals have intensive care units, not sure they would accept a long term ITU bed blocker though!

From reading the court judgement linked up thread, doctors want to withdraw dialysis, but not ventilation, because they believe ongoing dialysis is not in her best interests when she is unlikely to survive much longer. If she has a respiratory arrest (Which she has had in the past), they would no longer resuscitate her.

I think there is a feeling among a lot of medical professionals that resuscitation is painful and distressing and not a good way to die.

Doctors believe she has a 75% chance of dying in the next month, which she rejects- and she believes she has a chance of recovering enough to survive without a ventilator, which doctors do not feel is possible.

Personally, I do feel they should continue with haemodialysis, if that is what she wants, and if she wants to avoid using morphine at the moment, then I think that should be honoured, even if it's not what doctors would choose for themselves.

The family can't privately fundraise because she isn't allowed to be named publicly, although they could do so anonymously. There aren't many private ICUs in the UK, and my understanding is they mainly exist for patients who've had post operative complications in a private hospital. I would imagine, even if the parents could pay, they'd struggle to find a private ICU willing to accept her or that could meet her needs.

She is not studying and her doctors have given her a very poor prognosis, with possibly days or weeks to live.

The case is being heard in court, as is proper. The judge, not the NHS is the final arbiter. Reporting on cases like this is usually skewed by shady entities with an interest in seeking to undermine the NHS. Don't get suckered by it.

Imagine if a doctor burnt symbols into a patient's skin inflicting horrible pain and loss of dignity. Now would saying "the patient asked me to, they believed it would cure them" be a defence for that doctor?

Just because some treatments are recognised to have some benefits to some patients in some circumstances doesn't alter the principle. Medical professionals are not under an obligation (and indeed must not, or if decision making is complex have to get a court involved) provide harmful and futile treatment.

Especially not one who is clearly dying.

It's not a case of it being too expensive but that may come into play with a stretched NHS.

But at this point, all the experts are saying that she is only being kept alive by intensive medical treatment.

And that if removed from that, she will die
And she's slowly dying anyway so the life support is just delaying that.

So what is the point in continuing her life artificially?

I've read the judgment, and when you see the arguments and evidence explored
and evaluated in a forensic, dispassionate way, I think it's hard to disagree with the ruling.

It's tragic, and I hope this poor young woman manages to find some peace with it.

It’s all well and good saying transfer her to a private hospital…it doesn’t happen like that, you have to find a private consultant that would take you on then a private hospital that would accept you. You can’t just turn up at a private hospital with a cheque and get treatment. They are very picky on taking on anyone with complex needs!

I doubt very much if they ventilate. If things go wrong in the private sector they move the patient to the NHS. The private interpretation of ITU falls far short of reality. Saying they have that facility is purely for patient reassurance.

There are lots of people who are kept alive artificially if they have a disability, though, and many of them have progressive, terminal illnesses. Muscular dystrophy is something that springs to mind as somewhat comparable.

It seems likely that even with continued medical intervention, she is likely to die relatively soon. I'm not sure what the benefit is to withdrawing dialysis at this point, except causing a young person who is dying further distress.

My young adult DS has mitochondrial disease, albeit not as serious as this young lady. I have heard so much shite over the years from Doctors in the UK (where I used to live) and the USA (where I now live). He was sickly from the day he was born. He was finally diagnosed when he was 11. His diagnosis came 5 years before there was an official diagnosis code to go with it. Unfortunately the disease is rare, so there is very little research in the form of clinical trials, so patients have to rely on anecdotal evidence. We did a lot of experimental treatments under the care of a Pediatric Mitochondrial Specialist. They mostly helped, but there were still weeks, sometimes months where he couldn't get out of bed because some part of his body wasn't functioning properly. Symptoms included cyclical vomiting, migraines, periodic blindness, psychotic episodes, chronic fatigue, hypermobility, cardiac issues, etc. etc. Before DS was diagnosed I was threatened by a medical professional (in both the UK and USA) that I was going to be reported to Social Services for suspected Munchausen By Proxy if I didn't stop insisting that there was something wrong with him. It was such a relief to finally get a document with genetic testing and a diagnosis. I had to stop working because it was a full time job caring for him.
All I can say is that it's not simple, not obvious and there are no right or wrong decisions.

I'm not sure why they are not exploring experimental treatments in the UK, or perhaps they are and it just hasn't been reported.

My DS has gone into a bit of denial about his disease in his early 20's and I've heard similar from other families in the same situation.

My heart goes out to everyone involved.

That's a bit different though, because it's not a proven medical treatment.

To be clear, I do think it's clearly impossible for her to go to Canada.

But I do think she should be allowed to continue with dialysis (which is, after all, part of mainstream medicine) for as long as she wishes to do so.

If she funds it all herself, what does it matter how much it costs?

Because, @Prescottdanni123, the "cost" involves a lot more than just £££

Realistically, to raise the sort of money donated to previous similar "causes" she'd have to publicise herself, and we've all seen where that leads and the damage that gets done

It is an interesting stance to deny any life extending treatments to anyone with a terminal or progressive illness. You have terminal cancer - no antibiotics for you. I think refusing all treatments including removing existing treatments from someone who is aware and wants to live as long as they can and who according to half the experts is competent with the exception of specific beliefs is problematic. They wanted to do this back in February. They clearly don’t feel the last six months of her life had any value and she would have been better off dead and not taking up and but to her and her family her life has value and they don’t want to end it prematurely. There are many people who would die if dialysis was stopped. There are many people whose lives are only sustained by medical intervention.

given the experts who are fighting to end her life sooner keep saying her death is imminent and she has days to weeks, why not just let it happen. She isn’t suffering, she feels these extra days and weeks with her family have value and given how many people are on dialysis and antibiotics, it doesn’t seem extreme to let her stay on those until her imminent death.

No, I think that in this case the woman is conscious, alert and communicating. She wants to live for as long as possible and I am concerned about the ethics of hastening her death against her will on the basis that she is delusional about how long she has left to live because she has been told she will die but nobody can accurately say when. And for what it's worth, if resources were correctly allocated in the NHS, I suspect we would not be having this discussion.

They have facilities for people who need Intensive Care (ie are highly dependent) post surgery. Both my parents had coronary bypass surgery in a private hospital and were in a High Dependency Unit for 24 hours or so immediately after leaving theatre.

If they'd not progressed normally they'd have been blue lighted to the city's NHS Teaching Hospital likety split!!!

I assume these are patients who are medically stable enough to travel and who are unlikely to die during the flight though?

I'm familiar with those agencies.

They cannot and would not transport an individual on a ventilator. Some interventions can only be provided in a H
hospital setting.

Have you read the judgement? It is heartbreaking. ST has a progressive illness which means that her current hold on life is precarious and wholly dependent on support for her breathing, nutrition and kidney function. She has had numerous episodes when she has been close to death and only medical intervention, often invasive and painful has saved her. Her illness is killing her, possibly very soon.

The treatment her family want to pursue would not improve her current medical situation, she will never breathe independently, she will never eat independently, she will never regain kidney function or be well enough for a transplant.

There are three places that “offer” this treatment experimentally. The Canadian project has no funding. The US places have not examined her medical history, have not said that she would be accepted onto their programmes or that their programmes would be effective for her particular variation of the disease.

My thoughts are that this is a tragic situation for ST and her family, she is clearly a bright girl , who has been dealt a shitty hand - both with her original diagnosis and with the episodes that have kept her in intensive care for so long - as have her parents and family, but it is clear from the doctors reports that her condition due to her progressive disease is deteriorating, and the focus should be on helping her comes to terms with this, and not relying on an unrealistic and unattainable situation that she would be unable to even access since travelling to the states is unrealistic in her state of health.

Hundreds of young people receive horrific and terminal diagnosis every year. If it was me, and I know it is easy to say, but I would not my child’s last months of life be consumed by anxiety about court cases, capacity and irrational hopes proposed by people who by past experience have their own agenda which does not necessarily promote the wellbeing of the people they are purporting to support. . I would want their end of life journey to be filled with positive memories not doubts and uncertainties as it appears STs poor little life is at present.