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

I would not wish dying during active resuscitation on my worst enemy. Resus is brutal and respiratory arrest is IMHO worse than cardiac arrest.

She is going to arrest again, and if she recovers then it will inevitably happen again, each time more damage is done to the lungs and brain.

Once she is brain dead will the parents still want to keep treating her?

On twitter I have been called a fascist, a murderer and evil for stating some facts about this case.

The usual suspects are already comparing it to Charlie Guard, claimed she is a prisoner and not allowed to leave.

She's no more a prisoner than somebody on the ISS is. And they'd stop anybody who said they wanted to go for a spacewalk without a suit because they thought it was 50:50 that there was air out there because their Mum told them so, too.

Yet, this is how the young person is describing it.

because from her point of view, and to her parents point of view, being identified is the first push of what they see as a sure fire domino chain to get what they want .

Named

Publicity via tabloids

ST Army invigorated

Funds raised

Treatment in pilot programme agreed

Plane booked

Safe journey accomplished

Treatment completed

ST off breathing support, condition improved, possibly cured.

Saying the court has made a gagging order is easier than coming to understand that the treatment path they envisage is a non starter from the word go.

im not sure this young woman is expecting to be cured. I think she wants a chance to try something she is hoping will help.
And that starts with getting some funds AND being able to leave the U.K. to get said treatment.

Just now we are at the start of a process (started by her own doctors - so there is now no way shell ever trust them) to stop her from doing any of that.

Its not surprising then that what she hears is ‘you want to kill me by withdrawing treatemnt’

Which is likely demonstrating their lack of understanding and lack of capacity in this particular area.

When I see reference to the Christian Legal Centre and/or Mr Quintavalle I reach for my gun......

I think the relevant part of this article is that she is being legally prevented from seeking further treatment by the NHS.
Whatever is wrong with her, she should be able to go elsewhere without question. And if she is indeed ‘repeatedly told that she’s going to die’ and then doesn’t die that is pretty shocking behaviour by the medical establishment. It’s almost like emotional murder. We all know that doctors give us the worst case scenario to cover their asses all the time but it doesn’t help us to get better.

Where in the court's judgement does it say she's legally prevented from seeking further NHS treatment?

That's a great answer, and unfortunately it describes exactly the simplistic thought process which the girl is having.

And this is how her "supporters" are absolutely going to perceive this.

It won't be long before some idiot starts a ridiculous campaign to "save" her.

There is no further treatment. You haven't read the ruling.

No-one is offering her further or alternative treatment.

She, influenced by her family hopes there will be. But there is no current offer or opportunity.

And experts in her disease have said even if there was in another country, she will not ever be well enough to travel there and even if a miracle occurred and she survived the journey, it's extremely unlikely it would help in any way.

She is going to die. But her current medical team have said even if some treatment is withdrawn it could still be months. But no-one has said she won't die or could be saved by some experimental treatment. They've all said she's going to die but no-one is able to say when.

What she's clinging on to is the fact she's been near-death in respiratory arrest and medical treatment delayed her death. So she thinks she's a survivor, she thinks that was due to covid and not her disease and Jesus will continue to save her. What the medical team is saying is they just delayed her death, it is inevitable and continuing to use artificial means to keep her alive is not the best and least harmful course of action.

Inevitable that the "Christian Legal Centre" would come crawling out of the woodwork once again, but I though it was established last time that they're not staffed by legal profeessionals at all?

Someone please correct me if I'm wrong, but wasn't it said that most are at best "trainees" in this and that, but mainly noisy malcontents with an axe to grind?

Remember under Uk law a competent patient can withdraw or refuse consent for any treatment they wish. But they cannot demand doctors to deliver a specific treatment. Sadly there are occasions where we have to tell patients that their plans are unrealistic or unfeasible. Staff are not required to carry those out because a patient or relative insists.
Of course in the vast majority of cases this is resolved at a local level without any animosity

Also palliative care is not just about syringe drivers or morphine. It is about advanced planning to avoid further distress. And especially to avoid hasty decisions having to be made in an emergency.
So if STs dialysis line clots off should it be replaced - an invasive procedure? If the tracheostomy stoma gets infected should she go to theatre to have it refashioned - with all the risks that entails?

These are decisions best made in the calm light if day before the need arises. Again in most cases this is done without needing court input.

There is no offer of treatment elsewhere and even if there was, she's too ill to travel.

Absolutely. And the reverse also applies even when healthcare teams and family want something to happen.

There are practicalities to be taken into consideration even if someone is assessed as not having capacity under the MCA.

I've known 2 people refuse potentially life-saving treatment in a non-emergency situation who were assessed as not having capacity in regards to that particular decision.

But the practicalities in e.g forcing someone to have chemo or dialysis were untenable.

These are aspects of the article that you don’t really know the truth of.

There is no more treatment that the NHS can offer her. He condition is incurable and she is going to die. The judge has confirmed that the treatment in Canada is not possible as there is no place that provides it. The BBC article states that she knows she needs to be weened from the ventilator but the team in charge of her care have stated she will die once unventilated.
What do you propose the NHS actually do?

This just makes you sound suspicious. Why do you feel this way about it?

Regardless, her right to seek alternative treatment is being legally prevented. So are you saying that solely to stop a dying girls delusion the NHS have gone to the expense of a court case and obtained the possibly biased view of all the relevant experts?

She isn't being stopped from seeking alternative treatment, the hospital is sending her notes when requested. The issue is there is no alternative being offered by another provider.

If all relevant experts are saying one thing, you can bet your arse it's because it's the truth, however unpalatable that is, rather than them all being biased

I don't think this is so much about her being vented or having dialysis or feeding tube etc, as her being medically unstable.

People can and do live at home on ventilation through a trachy, obviously with a care package in place to support this. They can fly whilst on a ventilator. The same applies for people on dialysis/needing feeding support.

What we don't know fully is whether there's been no move to bring her home because (1) she's too medically unstable/had other care needs that can only be managed in ITU or (2) it was deemed unnecessary because it's been assumed since her admission that she would die soon, so not worth getting a long term plan in place. Obviously the two are linked.

I don't for a minute think there's any point in her going to Canada, bar her feeling she tried every possibly option, however it a different thing saying she can't go because she's on a ventilator, which doesn't appear to be true, and saying she can't go because she's too unstable, which seems a lot more realistic.

... the hospital is sending her notes when requested

Yes, I picked up on just how much the hospital's been doing to facilitate what is available myeslf, but then I've read the full report and it's pretty easy to pick out the occasional ones who clearly haven't

If what you're looking for is a conspiracy theory, Inwiththenew, I think you'll find there are plenty of other forums happy to host them

No it isn't.

What do you think you're talking about?

This particular issue in regards to her capacity went through the court of protection so she is prevented from being identified to protect her.

It has f-all to do with the NHS wanting anything. I'm sure her NHS consultants would be willing to speak publicly on record, they are not able to because of the court.

There's no conspiracy. She's not being gagged.

You really need to read the ruling which at this point is just about her capacity and nothing to do with treatment plans.

You're going on tabloids and their headlines and not bothering to actually know what is happening

Which is infuriating and if she was identified in the press leads to the social media campaigns and protests outside hospitals by people who can’t be arsed to look beyond a tabloid headline and actually understand what is happening .