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've also read the ruling. It's very difficult. As an adult, I'm not sure I'd be able to accept the prospect of imminent death either. It's human nature to want to keep fighting, particularly when you're only 19.

If I've understood the legal arguments correctly, it's this lack of acceptance of death (which they refer to as delusional at some points) that leads them to rule the claimant doesn't have the necessary mental capacity to make decisions on her treatment. The various psychiatrists otherwise agree she understands her condition and treatment options.

I understand why her doctors don't feel it's the right option and she'd probably not survive the journey. If she's able to be accepted onto one of the trials within a reasonable time period, I think I'd err on letting her make that call. Provided she's able to provide medical care for the journey which shouldn't be covered by the NHS. It's a different situation to the cases involving babies who can't advocate for themselves.

there must be such an irony in living in the US where in many states a woman is unable legally to make decisions about whether she wishes to continue an unwanted pregnancy or not and can be prosecuted for choosing to have an abortion , but where Dr's are forced to continue unethical treatment for a patient with no hope of recovery.

The lack of acceptance of death is extremely common though, regardless of your age.
The usual answer to that from medics is to accept that the patient isn’t ready to face that.

Just on MN, there was a thread from a woman who went private in the U.K. for one last chance to treat her cancer (even if it was to get a few more months), despite the doctors telling her she only had very little time left. No one told her it was futile. As some doctors have said ‘who am I to decide that this 0.05% chance of working isn’t worth taking?’

We’re not saying that patients don’t have capacity because they refuse to admit they are dying. So why doing so in this case?

Also I can see her pov where she has had a lifetime of doctors telling her she was dying and she is still here.

Why would you believe them when they’ve had wrong so many times??

Just on MN, there was a thread from a woman who went private in the U.K. for one last chance to treat her cancer (even if it was to get a few more months), despite the doctors telling her she only had very little time left. No one told her it was futile. As some doctors have said ‘who am I to decide that this 0.05% chance of working isn’t worth taking?’

My experience is that in the NHS, largely doctors stick to not offering treatments they believe to be futile.

However in the private sector, there is always someone to take your money. It can be like the Wild West.

The issue being reported upon is whether she has the capacity to instruct lawyers.

Questions about whether she can be moved, or whether further treatment is futile only extending suffering will be for another Judge on another day.

We’re not saying that patients don’t have capacity because they refuse to admit they are dying. So why doing so in this case?

This is how I feel. If you're referring to Pamela, in her shoes, I'd have done the same thing. She had a son and she also died trying to live. It was extremely sad but she took that very slim chance.

If it was me, or my children, I'd probably do the same in her shoes. But she's effectively being denied that option because she doesn't accept she's dying.

No disrespect to her doctors who are clearly also doing what they think is in her best interests. It just feels a bit of a dangerous precedent to base it on an patient's attitude to dying. Provided they make the necessary arrangements and there's no further burden on the NHS.

This isnt technically a “gagging” order. There is no injunction preventing the press from reporting on this case, and the young woman has had an exclusive interview with the daily mail. The court of protection is a private court, so the parties involved are made anonymous to protect their privacy and dignity. There’s really nothing sinister about it, it’s to stop a media circus and frenzy building up during this horribly difficult time for her.

Denial is a brilliant coping mechanism, and from my experience as a cancer and palliative care nurse, people in denial often far exceed their original prognosis.

ST is in denial that it’s her disease to blame for her respiratory and renal failure, instead blaming it on long Covid. She believes she may get off the ventilator at some point, and thinks the new drug awaiting clinical trial - which is for an entirely different type of mitochondrial disease to the one she has - might enable her to get off the ventilator. These are unreasonable expectations, but “hope dies last” and can be a powerful force for life.

Firstly there's nowhere for her to journey to for treatment. That's one of the things she is deluded about. Secondly, if she's only alive because she's in ICU, there's no way she would be able to make a journey anywhere. If she leaves, she will die.

My experience is that in the NHS, largely doctors stick to not offering treatments they believe to be futile.

However in the private sector, there is always someone to take your money. It can be like the Wild West.

And it’s still the patient choice to decide what they want to do or not. The fact they are choosing ‘alternative ways’ doesn’t mean it’s wrong FOR THEM to do so.

Doctors do not have a crystal ball. They often get things wrong, esp when it comes to life expectancy or rare diseases (or one’s they don’t know much about). A doctor BELIEF shouldn’t be accepted as the TRUTH or considered better than the patient belief. It’s the patient’s life. Up to them to decide how they want to do with said life.

@WomblingTree86 then she would die the way she wanted, taking the risks she wanted.
Why should someone decides how she should die? Because the alternative fur her so far is still dying. Just a different way.

And how is this to be facilitated?

If they can raise the money, pay for it all themselves, then surely its up to the girl and her family what happens even if its almost certain not to end well.

In my experience, the NHS do all they can to keep people alive well beyond what is humane. So if they are saying there is no further treatment, i suspect sadly that that’s the case.

We let people make 'informed choices', ie when they have all the information to make that choice.

This is different, ST's mother believes she will be cured in Canada, ST thinks she has a 50% of living if she gets to Canada.

Neither of these things are true.

We don't let people make choices that don't exist.

If she believed she would be cured by a trip to the international space station or meeting Queen Victoria we wouldn't 'allow' her to make those choices because they are impossible.

"if ST dies it would be far better for her family if they knew they’d tried every treatment possible"

This is the sort of delusion that is feeding this heartbreaking situation for this family.
There's no if she dies. She is terminal.

Have you joined the army yet, or waiting til she's named to come up with a cutesy name?

And it’s still the patient choice to decide what they want to do or not. The fact they are choosing ‘alternative ways’ doesn’t mean it’s wrong FOR THEM to do so.

This isn't how the law works in the UK. Patients do not get an infinite number of choices to have whatever treatment they like regardless of effectiveness.

In the UK a health professional cannot be forced to give a treatment they do not assess as being indicated or effective just because the patient wants it.

Exactly this. The issue is not that she lacks capacity, but that she is making judgements and decisions about her condition which are not based on the information her doctors are giving her but are, understandably, based on the opinions of the people she loves and trusts best in the world, through whom all her information is filtered and who are , in their desperation, perhaps not facing up to the reality of her situation.

It is something we have seen before , the difference in this case is that ST is a young person who is expressing her own opinions and the Courts are quite rightly spending time taking her opinions under consideration. It was different when the opinions in previous cases were mediated by the adult careers about their incapacitated children, this is a young but technically adult patient expressing her own views, and it makes the concept of capacity much harder to judge, because capacity re making a decision is not based on the appropriateness of the decision, but on the ability of the patient to take into account all the nuances and information available. And in this case the judge has ruled that ST has not understood the situation regarding any additional treatments.

It's funny how the NHS can quite happily allow people to miss out on basic care because but can stump up money to prevent someone raising money for treatment elsewhere even if it is going to be futile . I remember parents having to kidnap their son for proton beam therepy and as far as I remember the boy is still alive.

That case was an outlier.

Yawn

Would a Canadian team come and collect her so she could be signed off from NHS care removing the trauma for staff who've cared for her of seeing the consequences of moving her?

This has already been explained earlier in the thread that the child in question had an excellent chance of recovery with the treatment the NHS was offering its,just the parents preferred the proton therspy.

'Hey, Canadian Medics, how do you fancy flying over to disconnect the life support for a teenage girl who doesn't understand that she's going to endure an incredibly distressing death shortly after you disconnect it, whilst her mother screams and howls that you have to save her/you're killing her, attempt to resuscitate her in a country where you do not have the legal right to practise and all for a clinical trial that isn't even happening, so you're actually being invited to come over to kill her in the most unpleasant manner possible?'

There is no Canadian team!