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

Sadly, the staff would have no option, she had not consented to palliative care or (as far as we know) a DNR.

RIP ST

To her family she is a person, a loved one and she has a name. To the NHS and the court she was a number and an initial.

Families like to use names, it is a strong identity and part of attachment to the person. It honours them. Tha family should be allowed to talk about their experiene and their daughter. To continue to muzzle them and to deny them the right to use her name is such a power move by the hospital. All along they have taken the paternalistic medical model position of doctor knows best and anyone who questions that will be punished. I am not suprised they do not want to give up their power. To them, she is a nuisance, they do not want her to have a name or a face and now that she has died, they are on to the next people who they can rule with their power.

In many places the medical model has shifted to a more patient and family centered care where the patient and family are part of the decision making process. It is clear there are still some traditional 'don't question the doctor' models still out there.

There's no doctor knows best model but that doesn't mean patients always know best either. It's a joint decision and if there's no agreement as in this case the court decides. Not naming her in the hospital protects not only the healthcare professionals who treated her but also other patients and families in the hospital. If the hospital are named they will suffer too. In the case of Charlie Gard hospital staff had received death threats and other families, whose children were being treated at the hospital, were harassed.

WOW.

You should start a writing career with that imagination.

How very sad I hope she's at peace now
At least there wasn't time for a ridiculous Army to be formed and idiots turning up.to the hospital to " protest"

@saffronsoup, absolutely no-one is stopping her family from using her name. It is news organisations who are prevented from publishing it.

Absolutely. What a lot of nonsense.

Well said, Blossom

No name? I imagine the staff at the hospital who cared for ST for nearly a year, who kept her alive through constant vigilance, attention to her physical needs, their skills in avoiding infections, their knowledge when dealing with her medical crises whether they were to do with dialysis, breathing, fever, feeding, pressure sores, trachy maintenance or pain relief, their patience in managing with her communication issues, her distress at being in an ICU and witnessing distressing scenes, her despair at her situation, her fragility both physical, emotional and mental ………

I imagine all those people, and there must be a lot of them, knew her name, and used her name, she wasn’t a number to them, she was a patient with more needs than others who was kept alive for longer than many predicted by their professionalism, understanding and compassion. They will have built up relationships with ST and will be feeling sadness at her death .

I think it says a lot about you @saffronsoup that you think she was a number to them.

I'm see it's been reported in the Catholic Herald, that she has died.

I know it's hardly CNN or the BBC, but it's misleading how they sort of imply the legal fight obstructed/delayed her from travelling abroad before she died.

She was actually hoping to stay alive till the trials (paused due to lack of funding) became available again, if ever. So legal fight or not, she would've died before the trials became available (if they ever do in future).

The previous Mirror article also used purposely misleading language, saying Canada hospitals wanted to treat her (when really it would just be trying to keep her alive like in the NHS) and then there would be "subsequent clinical trials".

My condolences to her and her family though.

I couldn't find it reported anywhere else.

It was a criticism of their reporting, not your post.

The Catholic Herald is a complete rag. Also on their front page: why conversion therapy is good actually and why sex education, abortion and the lack of patriarchy is what led Russel Brand to get away with rape.

It can't really call itself a news outlet.

It has been reported elsewhere - see the post at 20.17 on 14th September.

https://www.dailymail.co.uk/news/article-12547471/Charlie-Gards-mother-understand-pain-legal-battle-child-alive.html

Few bits in the article that don't seem to match up with either case...but the Mail do seem to have put their own spin on things

It's all a bit misleading the whole "battle to keep them alive" narrative. While I'm not doctor I'm not convinced that there are as many of these last minute rescues from death via a novel treatment cases as the general public want to believe. Genuinely curious here, does it happen often?

I feel sorry for the families but I'm more cynical of news outlets buying into all this for the dramatic sounding headlines.

Wasn't there a case where the family took their child to France for treatment and they survived...? I can't remember the details

I'd be interested to know what stage of their condition they were at, I think most of us are very sheltered from the processes around dying. I think we want to see things as more reversible than they are if that makes sense.

In these cases it sounds like their children were terminally ill with a disease process that sadly didn't care what legal decisions were being made elsewhere. It's hard getting your head around how little control you sometimes have.

@WhatNoRaisins I think it was pretty clear in the judgment, that she was eve state. And I think had had several profound deteriorations. But I maybe mistaking that for another case.

I suspect that's the Aysha King case discussed upthread. It's always dragged out when cases like the Charlie Gard one hit the news, and it's always misrepresented as brave parents saving their son from evil doctors.

What in fact happened was that his life had been saved by those evil doctors removing his brain tumours, despite a number of efforts by his parents (at least one of whom was a Jenovah's Witnesses) to prevent or delay investigations and treatment, e.g. a shunt to relieve fluid pressure on his brain. With chemotherapy and radiotherapy he had an 80% chance of survival. His parents didn't want chemotherapy and wanted proton beam therapy which for some brain tumours can reduce side effects - however, it was unlikely to do so in Aysha's case due to the site of his tumour. Nevertheless, the UK hospital was liaising with a hospital abroad with a view to him receiving that treatment.

Without waiting for that, or indeed finding out how to use his feeding tube, Aysha's parents took him out of hospital. They didn't take him to a hospital able to provide proton therapy, and in fact there was no evidence that they were even in touch with one for that purpose. Instead they dragged him round Europe and he was very ill by the time they were found in a hotel. They didn't save his life, they endangered it, and a later review concluded they had reduced his chances of recovery by 30%. He's still very disabled.

What a typically Mail load of nonsense that article is. Where does Connie Yates get the idea that the hospital was withholding medication that would have kept ST alive? No-one has ever suggested that.

As for the notion that her parents are scared to say her name aloud, it seems pretty clear that they were rightly cautious about giving it to someone who was plainly looking to run off to the papers for some more publicity. They're perfectly free to say it aloud as much as they want.

Yes it was Aysha, I had a vague recollection of it. Sorry didn't realise it had been discussed upthread!

This won't be impartial for Connie Yates, sadly the condition is not treatable as yet.

Connor Yates is still, sadly, in denial.
And the DM loves misrepresenting things like this. Very lazy journalism.