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's obviously more going on behind the scenes. It brings to mind the Archie Battersbee case, where his mother absolutely refused to believe that there was no chance of recovery and repeatedly dragged it through the courts. The gagging order will be to prevent a similar media circus from occurring.

The thing is, it's nothing like Archie Battersbee. This young lady is alive, talking, studying. Archie was essentially dead already.

Why shouldn't she take every opportunity to live longer?

While I have mixed feelings about this woman being found lacking capacity the reality is:

There is no experimental treatment in Canada - she just refuses to believe there isn't
She almost certainly isn't fit for a flight to Canada
She has absolutely no funding for any of this but just 'believes' that a fundraiser will raise all the money for her flight, ICU bed and non-existent trial in Canada

So she is quite far from being reasonable and rational

I'd like to know about this too.

Apparently she gave her parents authority to make decisions and has expressed herself her wish to live - but they want to withdraw treatment.

I know these things are complex but it said the NHS are blocking her trying to get treatment elsewhere (why?) also, the fact that they have put a gagging order on it leans it is almost impossible for the family to set up a go fund me etc for treatment.

She has been in ITU for a year. That suggests she's pretty ill.

I also think there's more going on behind the scenes.

No way would she be fit enough for a trip to Canada.

Given that lots of people successfully fundraisers and seek treatment elsewhere, I'd assume there is more to this than the family are saying. Obviously the hospital is also unable to comment.

The only medical fact i know something about in that article is wrong, which makes me very cautious about any facts in that piece at all. The second half of the piece also contradicts the first. I'm.glad they can't name the hospital due to the disruptive circus of protesters that got set up near hospitals in the past.

She isn't studying. The article says that schools have said they would take her back for a-levels - two different things. She's presumably using eye gaze tech to express herself, but has been deemed not to have mental capacity to make this kind of decision. There's clearly a lot going on.

I just think we don't know her situation at all from that.

I don’t think she’s as well as you’re suggesting. Eg her quotes in this article are not necessarily from her physically speaking, the article suggests she communicates through writing things down instead of verbally. So “talking” is a question mark

studying is a question mark too- her studies seem to have been suspended since she’s been in hospital for over a year? She’s not actively studying.

FACTS:

• She has received a tracheostomy permitting her to speak, otherwise, she writes any notes with a Smartbox, similar to an iPad, which aids those with limited speech

• She relies on regular dialysis, is fed by a tube, and is bound to a ventilator that helps her breathe.

• problems developed with her kidneys which meant she had to discontinue her studies and receive regular dialysis at a hospital as an outpatient.

The trial in Canada has been paused due to funding issues.

She hasn't been assessed as suitable for the trial even if it was ongoing.

She can not survive outside icu where she has been for the last year.

There isn't anywhere for her to currently go to get treatment all there is is management of symptoms.

ST isn't even accepting that her current issues are due to the mitochondrial disease so although may appear to have capacity generally may not have it in this specific situation.

There will inevitably be much, much more to the story than is in a story in The Mirror, well known for its thoughtful and accurate coverage of medical conditions............

She has been in intensive care for a year. Currently needing ventilator via a tracheostomy to “breathe” for her, is being fed via a gastrostomy tube directly into her stomach and has kidney failure meaning she needs haemodialysis. She has a mitochondrial disorder that is killing her of course she and her loving family cannot accept that. If an experimental treatment suitable for the condition was to become available then it is likely it would not offer significant change for someone in such advanced stages of such a cruel disease.

Transporting a patient requiring continuous vetilation and dialysis is a massive and risky undertaking. I cannot believe any medical transportation service would be willing to transport her to Canada or USA to wait for an experimental treatment to become available.

I expect much of the gagging order is to protect the doctors and prevent a circus outside the hospital (like the one faced by alderhey)

This article gives more context to the case https://www.bbc.com/news/health-66673511

Hearing the case this week, Mrs Justice Roberts said treatment in Canada was "not an immediate option" because the trial has been paused as a result of funding constraints. "None of the material disclosed by the family or the trust in relation to potential treatment options in North America confirms that ST will be considered eligible," she added.

We only have one side of the story without the proper background. Decisions like this aren’t taken lightly. Sadly cases like that are always going to be emotive and complex

As far as I understand it, the patient refuses to accept that she is 'actively dying' and therefore rejects the reality of her situation.

The medical team looking after her believes that therefore she is not able to make decisions about herself.

She is a icu patient who cannot travel safely. A journey will likely kill her and the end could be chaotic and distressing. This is not in her best interests.

Hence asking the courts to pronounce on her best interests.

The hospital is not named to avoid the Charlie's Army type of disruption seen in the recent past.

A very sad situation.

Please note IANAL.

She's already been deemed to lack capacity because she doesn't believe she's dying - or that it's due to mitochondrial disease, IIRC, she thinks it's Long Covid and she will be cured by magicking herself to Canada for a trial that isn't happening and where she'd be dead before she left the carpark.

ETA: and the religious group descending upon this is the same one involved with all the other cases.

Justice Roberts' decision appears to be perfectly cogent. If the patient will not accept the facts regarding her diagnosis, then she can not claim to be making reasonable, informed decisions about her situation.

Not an “NHS gagging order” - her case is going through the Court of Protection and you can read the initial ruling saying that she doesn’t have capacity here - https://www.bailii.org/ew/cases/EWCOP/2023/40.html

Maybe read the actual ruling before you comment

If she wants alternative treatment then she should be allowed. The doctors fighting against this would probably spout about it could undue suffering if it turns out to be ineffective but we wouldn't get any new treatments for anything if people weren't willing to accept the risks and give it a try. It is how we have every type of treatment we have today.

The gagging order instantly makes the doctors look shady. If there is nothing dodgy going on at their end, let her have her say. If she is in the wrong, it will come to light in court.

Of the 'facts' above, she almost certainly did not 'receive a tracheostomy permitting her to speak'. The tracheostomy is likely to be for her respiratory needs and perhaps to allow her secretions to be taken off her chest as she may well be too weak to cough them up. The tracheostomy may make producing voice more difficult depending on the type, or she may be too weak to make voice, which would be why she uses a Smartbox, likely with eye gaze tech.

None of that means in itself she can't communicate her wishes but if that's wrong, I wonder what else is.

This stuff really upsets me because it isn’t hard to find the rulings and read what actually has been said and why decisions have been made. The reporting is of such a low standard, yet again, and suddenly everyone is an expert on ICU medicine, capacity assessments and the Court of Protection.

A very sad story, its also a waste of resources.

There is no alternative treatment. The act of attempting to leave the ventilator, dialysis machine and everything else she's hooked up to, never mind then being transported to an air ambulance and flown at 30,000 to Canada would result in her dying horribly. And likely with a parent going ballistic mid air if by some miracle she survived long enough to be wheeled onto the tarmac.

What alternative treatment though?
It doesn't look like there is anything out there for her, even if she was well enough to travel to it (which, sadly, she isn't)

She’s sat GCSE’s and passed them - and is taking A levels ?

ST added: “My doctors are saying because they cannot treat my MDS, I should not be having any more life-preserving treatment. Instead, I should be filled up with opioids so I will lose consciousness and die. I do not want this and want to try the treatment being offered abroad. It might be a small chance, but it is my only chance.”
Sounds like a she realises she’s dying but wants to try treatment- the cost is 10-15 million. I imagine feeding tubes etc would accompany her for that kind of money.

“Then, devastatingly, in September 2022, they were told she only had days to live….. “ yet she’s still alive?

If they raise the money, what’s the problem? Yes she may die trying but surely that’s up to her not the NHS.