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

God, that Mail article is maddening.

ST, a 19-year-old girl who, like Charlie suffered from mitochondrial DNA depletion syndrome, passed away last week while she and her distraught family fought for the right to access the same potentially life-prolonging treatment as the little boy.

There was no treatment available for ST! A few potential future trials that don’t yet have funding! Such wilful misrepresentation. “Fought for the right to access” something that doesn’t actually exist.

I don't think it's lazy journalism. It takes a lot of work to distort facts like that into a prearranged frame without ever directly lying. Look at the way they manage to move from the doctor's view that ST was actively dying, to her death soon afterwards, without actually allowing the two to link up into a sentence with the obvious implication that the doctors did know what they were talking about.

Agreed. Also purposely really vague words implying a magic cure

Nor indeed was there any available for Charlie Gard. He was irreversibly brain damaged, there is no treatment for that, and even the New York doctor they called as a witness agreed that they couldn't treat him.

Thats what I thought didn't make sense. It wasn't a case of the doctors changed their mind. They applied to the ethnics committee and then he took a turn for the worse and was to late.

This case there wasn't any treatment offered yet from sounds as trials had stopped so again misleading

I'm glad for her family and friends that her name has been released

I've reached the conclusion that the articles are just an excuse to bash the NHS in the hope that people can be persuaded that privatisation is the best way forward. Of course what they don't understand is that if we had to take out insurance most people wouldn't even get extensive treatment as the insurance company would decide on the basis of cost.

Ashya.

I am sorry for their loss, and I am even more sorry that they are not yet able to accept that from the moment Sudiksha was admitted to the ICU ward following the devastation that the Covid infection wrought on her already weakened and damaged body, and with the terminal nature of her pre existing condition, her life expectancy and chances of recovery were nil. That they managed to have nearly an extra year with her is a testament to the amazing medical and nursing care she was given. I am also truly sorry that they were misled by the Snake oil organisation that seems to have cornered the market in preying on vulnerable, desperate families to promote their own dubious agenda.

I noticed that they said "if she'd had the nucleotide. (Or whatever it's called) she might have still been alive" or words to that effect.

There was no treatment for her to have.

No, the treatment was even not operative at the time. Does anyone know if it's had ANY efficency?

It does not actually exist. It's a possible experimental treatment for people who are not actively dying, which Sudiksha was.

Sudiksha actually died of cardiac arrest three days after this thread was started.
I do think that it's a great shame she wasn't spared such an end, but she would not countenance talking about palliative care.

So true. I speak from personal painful experience of losing someone, but with some memories and closure... It's such a pity that they didn't spend the extra year creating and treasuring memories and moments with her, even with the limitations of hospitalisation and her illness. Instead they spent it all on denial, delusion, conflict with other parties, etc.

Also, why is it always a religious organisation? I'm confused about what Christianity or the Catholic faith have to do with artificial (albeit non existent in this case and others) man-made intervention/treatments. Surely religious people would say God's plan is God's plan etc?

The only reason she had the extra year is because she fought tooth and nail to be allowed to continue to live. I am glad she had that fight in her and it mattered to her and her family. Even if many thought she should have died a year ago and not been given any treatment or any health care as she was given a terminal diagnosis, for her she wanted to live as much life as she could. And to her family and friends who cared about her, I am glad too that they had that extra time with her. Anyone who doesn't wish to live or doesn't wish their family member to live after a terminal diagnosis has the choice to commit suicide or to refuse all health care and die as quickly as possible. However for those who wish to live as long as possible, they should also have that right.

The condolences on here now for her and her family are so fake - if you read back many of the same posters had nothing but criticism and disgust and name calling for her and her family.

She didn't fight tooth and nail. She simply didn't consent to any sort of plan for moving to palliative care. The notion that the hospital contributed nothing to keeping her alive is ridiculous.

There is no-one on this thread name-calling or expressing disgust about either Sudiksha or her family.

It’s a tragic case all round. I’ve said several times on this thread that denial can be a brilliant coping mechanism, but it can also make meaningful conversations about treatment and prognosis even more difficult than they already are. The ICU staff kept her alive for a year, it’s disgusting to see the anti-hospital/anti-healthcare professional posts on this thread, and also voiced by the family.

BBC article (more about the removing of reporting restrictions than the case in general) https://www.bbc.co.uk/news/health-66893040

I think this case says a lot about unconscious bias and media bias, and how the media can use subtle things like choice of imagery to try to influence public opinion.

All the media coverage used stock of healthy, well-nourished white girls with healthy thick hair, sitting up and without any machines attached to them. I don't know to what extend that's a conscious choice (to try to give people the impression this was a healthy young woman being cruelly denied treatment) and to what degree it was laziness or subconscious bias (in terms of white being the default).

I think if actual photos of this young woman attached to all the various machinery keeping her alive had been released to the media, the media response and public response would have been very different.

This isn't true at all. Your post is just entirely, shockingly made up. It would make sense if the Daily Mail were your only source of facts but you're on a thread where people have posted links to the judgment, the BBC and other more sources more known for fact-checking.

She was in ITU for almost a year. The hospital didn't want to take her off life support as soon as she entered. The hospital has been providing full care in this one year. Palliative support was only mentioned recently, which we'll get to.

Over these months, her condition has been touch and go, with multiple episodes and of course an incredible level of daily medical support. From the start, doctors warned the family that she might go any time soon. They were preparing family for the most likely medical worst case scenario.

It's common for patients to not 100% fulfill the medical worse case scenario. As an example, we were told my loved one had only days to weeks to live, but they lived for months. While ST exceeded expectations, extra months – with lots of rescue attempts in between – isn't really a Jesus style medical miracle in terms of mitochondrial disease.

Again, the doctors did this WHILE providing full care for her. So realistically, the reason she lived that year was the doctors' and nurses' round-the-clock effort, vigilance, initiative and care. My own loved one was a fighter too but I won't ever pretend that was possible without the doctors' and nurses' 24/7 efforts. But the family have taken this as "well why is she still alive then? Doctors are not to be trusted".

Coming to the pallative care. Recently doctors noted that the incidences – during which doctors saved her life every single time – were getting more frequent. They noted that her body was failing in extreme ways (even the initial failure before that was extreme), on its way to full failure. Things would have got even more graphic and tragic (eg extreme pain, brain dead eventually - remember how Archie Battersbee's brain was dripping out his eyes..) if they kept manually keeping her alive just for the sake of it.

They thus advised moving to palliative care. Family said no and started the legal fight. The judgment came out quickly – it was only a capacity judgment (which comes right at the start). Then she died as doctors recently predicted (during their suggestion to move to palliative care). Doctors tried to treat and revive (as she had not consented to palliative) but did not succeed.

If there had been no lawsuit, ST would still be on palliative care at the time she had an attack and died. Basically lawsuit or not, she would've died at the same time.

I won't go into the emotional and practical weighing up of palliative care etc as it's so personal (like ST's family, I used to think it was just "giving up"; recently I have become grateful for the option of peace for a loved one in so much pain and suffering, when passing away was going to happen anyway).

But in terms of the actual effects of this whole saga, whether they had brought the lawsuit or not, she would have died at rhe same time. So I think it's a pity that they didn't just spend the last year creating loving memories with her. Of course we can't know the future, and sometimes there are religious and other miracles, but medical predictions can be a useful tool for us to make decisions on how we want to spend our time, who we want to spend it with.

Doctors don't control life and death – they can only inform us about it. Life and death control us. At some desperate point all the ITU, ICU, etc stop working (as in my case) despite doctors doing their absolute best. Seeking acceptance and closure before that, exchanging messages of love, is so important – and I hope they got a chance to do that.

Well, quite. Anyone who says it was her drive to live against those nasty doctors and nurses who were trying to kill her, has clearly never been inside an ITU. Without the dedication and extreme skill of the NHS staff she would have died a year earlier. You’re in ITU because you can’t survive outside it. ITU is normally 1:1 nursing, sometimes 2:1. It’s a lot of machines, constant attention and where needed intervention to manage every bodily function and reading. That’s what kept this poor girl alive for another year. As others have said, it’s sad that she and her family were not able to come to terms with the situation and move to palliative care. I hope with all my heart they find some level of peace now.

If you read the court document, you would be well aware the conversations about withdrawing current treatment started back in February. Since you haven't read the documents yourself - I am not sure what the point of your long post is.

Additionally there are many posts on this thread about how as soon as she received a terminal diaoagnosis, she should have accepted an imminent death. And that is was selfish and horrible of her to want to live or to fight to live and that she should have died before experiedcing any pain or suffering and that it is best for a family to accept and assist their family memmber in dying as quickly as possible after a diagnosis as it isn't fair for the family to see her suffer either. Many had a great deal of disgust and anger that she lived into 2023 at all as they think that was very wrong and that she was a horrhble young person and her family even worse for not ensuring her death came quickly after her diagnosis.

I worked in hospitals for over a decade so all these efforts to insist that all doctors and nurses are angels and amazing perfect beings who can do no wrong and are all altruisitc in evey thought word and deed makes me laugh. In many places the Doctors is God and you should never speak up or question the doctor is long gone. NOt in this case though. You can hear in their statements, their frustration at her not dying montsh and months ago. In this case, the health care team was clearly frustrated that she had wanted to live into 2023 against their advice and despite them continually telling her she would die any day since early 2023, she fought against that and wanted to live as long as she could. Their anger wasn't righteous. She has a right to be a person and not rolling over and dying when the health care team tells you too doesn't make me think of her with the same disgust that many posters voiced. Some people have a will to live and want more time. Not everyone just gives up and dies as soon as they are diagnosed and that shouldn't be seen as the expected status quo.

And despite the insistence she and her family were in the wrong for her to live this past year, I am sure all the posters insisting they would take palliative care for their children from Day 1 and work as quickly as possible to hasten their death to ensure there was no pain and suffering would not actually do that in real life. Friends close to me just went through this with a young adult child. I can't imagine them fighting him and insisting he needed to die quickly and that he was wrong in wanting to live or wanting to try possible but long shot treatments. Yet that is what many on here say they would do. That it wouldn't be fair for them to have to watch their child suffer or be in pain so they would push for death before any pain or suffering. In real life, they too might let their child live if they were fighting to do so.

The fact that this young woman had to be tube fed, ventilated and had to undergo dialysis surely leads any thinking person to the idea that survival is unlikely. Put in mitochondrial disease as well and there is clearly no hope of recovery. There is currently no cure for that, in future,perhaps, but today ,no.
I can remember when Charlie Gard was in the news and a family in USA were showing the story of their son who had apparently been 'cured', I felt the family were deluded as was clearly still very ill.
It's sad that the family thought that he was 'cured' and it's sad in this case too , that anyone would think that the NHS were acting in a way to prevent her being cured.

Palliative care is not “hastening death”. As others have pointed out, she died anyway. Palliative care would not have hastened that. It might have made her death more comfortable and less distressing and painful, and it would potentially have given her more good quality time with her family.

I recall one study which showed that patients on hospice/palliative care actually lived longer than those who “tried everything”.

She died anyway but had almost a year with her family and her personality was clearly one that had a will to live. Had she never been given any medical care after her terminal diagnosis other than increasing doses of morphine, it is unlikely she would have lived for very long. Some patients want that and that is fine but young adults (and others) often feel an early death is unfair and they do have a will to live as long as they can.

Her family has been fighting this legal battle for 6 months. It didn't just start now.