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

There is no Canadian team. There is no Canadian project. They have no funding. The US teams are focussed on a different type of the disease from the one ST has. The US teams have not said if ST would meet the criteria for inclusion on their programme. It is unlikely ST would survive the transfer to the US, she is very frail.

I think people are being distracted by the photograph accompanying the Mirror article. ST is not sitting up looking out of the window, chatting to her school mates about AL studies. She is in an ICU bed where she has been for nearly a year . She has a trachy to enable continual ventilation , she is tube fed, she is on dialysis because her kidneys have failed, all her muscles are extremely weak due to the continuing degenerative progression of her disease, she has poor hearing and other sensory losses, she has had pneumonia, and long Covid, has had to be resuscitated several times, her communication skills are limited and exhausting for her. Her disease is terminal.

She isn't going to die in the way that she wanted or taking the risks she wanted though. That is the point.

Very few of us die in the way we want. My mum definitely wouldn’t have wanted to die with dementia and weighing five stone dripping wet. I didn’t want that for her either but those were the cards life dealt her.

My point about the Canadian team.is the NHS isn't moving her and no one is coming to get her so unless her parents want to shove her down the corridor she's not going anywhere.

Incorrect. Someone posted in quite a lot of detail about his case. It was totally misrepresented by the press, and his parents actions did cause quite a lot of harm to him, which he continues to suffer from the effects of.

Her delusion isn’t harming anyone else, and it’s only harming her mentally so why not indulge it

Because the medics' purpose isn't to "indulge" people, but to provide what's best for them - especially when, as you rightly say, her wishes would do her active harm

As for why shouldn't she be allowed to fundraise, it's becoming worryingly clear that some are champing at the bit to encourage another Charlie Gard/Archie Battersbee online rampage. Maybe some even feel cheated of the opportunity to hammer out all those emojis, ridiculous theories and threats, and no doubt that's what the hospital quite rightly want to avoid

It would be nice to think that some who created the previous farces might reflect on their own part in what's happening, but from the outpourings they created I frankly doubt they have the insight

I did think they should provide a face-blurred photo really, though of course it wouldn't be in the media's (outrage generating) interests to do that.

"Unfortunately, I think that [ST’s] prognosis is extremely bleak. She has acquired an intolerable disease burden with generalised myopathy, respiratory failure, renal failure, severe gut dysmobility, deafness and severe swallowing problems. [She] is unable to be weaned from the ventilator because her respiratory muscles are too weak. They will remain weak and unable to support her breathing independently. In my experience of managing patients with mitochondrial disease, and more generally neurological disorders, I think it is evident that [ST] has entered a terminal phase of her illness. It is my opinion that the kindest and most clinically responsible course of action now would be to de-escalate the intensive care and make [ST] comfortable.”

The unpalatable reality is she probably doesn't even look human at this point, or won't soon (though of course her value as a human being remains completely unchanged and her best interests must be borne in mind, whatever that may constitute). The media photos are meant to mislead viewers subconsciously. It's said that Archie Battersbee's mother was posting much older photos of him, wearing makeup at that - in reality his skin was grey and his eyeballs were bulging (from brain coning) etc.

Even a face-blurred photo would be prurient material against her best interests.

The newspapers could use a stock photo of an ICU monitor, of a tracheostomy, of a PEG tube, of a courtroom, of a doctor in scrubs, of anything at all. They chose to use an image of a healthy young woman in white, with lovely shiny hair, sitting upright on a bed, facing away from the camera because if it had been facing towards the camera it would have been slightly too obvious how misleading it was. I wonder how many people who have seen that article think it's a picture of ST? I'm certain some do.

Yes indeed.
The reality of her appearance would likely horrify anyone reading the accompanying article.

@Boredombeckons many people with ALS have very similar issues and need to be on ventilation for be kept alive. Same with swallowing issues etc…

Are we saying that those people with motor neurone disease, when they start needing ventilation, should be to ‘de escalate’ treatment (aka letting them die)? Even though many of them carry on and WANT TO CARRY ON living for those months/years they still have whilst on ventilation/feeding tube etc…?

Im nit saying that the outlook isn’t stark. I’m not saying it’s easy.
But my personal experience with serious (chronic) illness is that you can find joy and will to live even in extremely hard circumstances.

Im very uncomfortable about any statement that basically says ‘it’s awful so we need to let her die’ when it goes against the wishes of that person. Even more so if we are talking about a few more weeks alive (if said doctors are right - which they haven’t so far re her life expectancy)

Im also against euphemism such as ‘de escalate treatment’ instead of ‘letting her die whilst made unconscious’ so there is no outward signs of distress

Even a face-blurred photo would be prurient material against her best interests

Very possibly, though my own worry is that some fool will break the "no-name" instruction and the whole circus will start again
I realise that might be actionable, but any consequences which followed would be lost in the shrieking and chaos, and in any case would be too late

It's very rare for people with MND to have a tracheostomy.

Most will have non-invasive ventilation at most, they also don't need dialysis. It's possible for them to live at home with round the clock care but ST would die outside of ITU.

Even with MND however there is a point where you would be told you weren't for CPR even though you wanted it, and the chances of ITU admission would be remote - as once tubed they would be impossible to wean.

Im very uncomfortable about any statement that basically says ‘it’s awful so we need to let her die’ when it goes against the wishes of that person

So am I, but that has to depend on the capability of the patient as it affects those wishes, and that's what the case is about

I think the problem with using misleading "healthy" images like that is that it brings about the kind of erroneous comparison you're making.

Putting aside the differences in both conditions, you're thinking of all the preceding stages of ALS. Are you aware that ALS is generally divided into 4 stages, and end of life is a stage all ALS patients and family members are very informed about, and generally universally accept? End stage ALS focuses on palliative care for maximum dignity and comfort.

If you've ever seen an ALS patient truly on their deathbed, I think you'd agree that it's not in their best interests to stick a million more tubes and machinery in them just to try to get them to a zombie-like condition while their brains degenerate anyway and they become basically non-sentient. She will be ventilated through her palliative care. It's the other invasive and painful processes they are stopping.

In any case, my opinion informed by my background in this area is that the judgment regarding her capacity will be overturned at some stage by the time it reaches the Supreme Court, but she will be blocked from seeking the non-existent magic treatment in America via some other legal means.

Oh yes definitely. I don't for one second think that's what ought to happen by default just because there's a legal case. Public interest considerations would be vastly outweighed here. BUT if her camp are going to create a media circus, then I can't help wishing personally for a face blurred photo to bring home the reality of the situation for those who take her family's (understandable) delusion at face value. That said as you pointed out it's not an either or and there are less misleading stock photos

It was horrific for other families in picu with one of the high profile cases too. The damage and fear those supporters did to the families in the picu is inexcusable.

I agree. She has clearly stated that she does not want to be made unconcious to die. It might be more comfortable for her but if and when the time comes the opportunity is there for her to change her mind. She is concious and has periods of lucidity. She could die at any moment anyway and if refusing to accept a prognosis of imminent death means that she might manage a few weeks extra of life and will spend her last month's positively interacting with her family rather than in a deep depression planning her funeral then that wish should be respected. All the capacity hearing has done is to destroy any trust between her and the medical team. There surely must have been a kinder way forward if she is looking at a maximum of two to three months at most.

I'm not sure that that is what has happened. The only source for that assertion is the newspaper report, which is inevitably sensationalised. I suspect that what has happened is that the doctors rightly warned her and her family when she has had medical crises, but because they have bust a gut to save her fortunately she survived. The poor doctors are damned whatever they do - if they didn't warn her parents and she died, they would rightly complain, but when they give a warning the family effectively blames them for rendering the warning unnecessary by saving her life.

But the patient needs to know and understand all the relevant information to make that decision. If this patient were saying "I want to try this even though I know it's a virtual certainty that I wouldn't make it out of the hospital" that would be OK. But this is a patient who is saying "I want to try this because I think I will be accepted onto trial, the trial will get funding, I will get the relevant visa, I will survive the journey and the trial will benefit me" which is simply not going to happen.

If a patient says "I want all treatment to be withdrawn because I believe the great purple cookie-monster will cure me" no reasonable doctor or court will say "Right-oh, you're entitled to that belief even though it's a clear indicator that you are totally deluded".

No, she wouldn't. Because she wants to take what she believes to be a 50% risk. If she knew and accepted that it would be a 99% risk, would she want that risk?

Your memory is inaccurate. Look at the posts upthread on the Ashya King case.

It actually wasn't even an outlier - based on expert medical advice, the court ruled in that instance that he SHOULD be allowed to pursue treatment abroad. In this girl's case, the court's judgment (as it stands now) is similarly grounded in expert medical advice.

We are in hell right now because our middle child in the process of receiving a diagnosis for a rare, neurodegenerative condition.

I want to know what time he has left so every moment is as good as it can be. I also want to make full use of medical care to make him as comfortable and happy as possible.

During the coverage of the Charlie Gard case, I said I would never extend my child's natural life unless they were conscious and aware.

Equally, why would you believe emotive tripe in the media rather than the court report, which explains what's actually happened?

I realise it doesn't have the same excitement as an 84pt font headline, but it's certainly more illuminating

I am very sorry for you and your family.
The girl in this case is conscious, aware and lucid.
A fact that seems to be being forgotten.