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 am not sure her death will be any more or less pleasant if her name and identity are revealed

Her death may not be, but the media circus at the hospital will quickly become intolerable for the staff and other patients there if the hospital is identified.

Some idiotic "Army for ST" might be created, causing unbearable chaos for all and sundry and not achieving anything positive for ST herself.

I am not sure her death will be any more or less pleasant if her name and identity are revealed.

Her name and identity are kept back to protect her. She isn't deemed to have the capacity to consent to medical treatment, so it is unlikely she has the capacity to consent to becoming a tabloid spectacle.

And, of course, there are other patients in the hospital to consider. Those who have had to visit dying friends and relatives know how upsetting going to hospital can be in those circumstances and the very last thing visitors need is having to get through a scrum of paparazzi.

On the case itself - I feel for the medical staff as well as the girl and her family. I'm glad I'm not the judge making the decisions, though I am confident that the judgement is as fair and objective as possible.

No
If stable, some people can go home on invasive ventilation.

Have a read of this article for a start

https://totalcommunitycare.co.uk/tracheostomy-care-at-home/

(And yes, this discusses being ventilated through the tracky at home).

Also, this screenshot.

ST is not stable, though.

Sigh...

Hence why I i have repeatedly said that the issue is her lack of stability, not the mere fact of her bring ventilated.

So what business is it of anyone else? As far as I'm aware we live in a free country & this family is entitled to say & think what they like.

You or anyone else can't know how you'd respond if you were in that situation.
By the grace of God go I, & you.

Exactly. Until we have enforced exclusion zones for protests within say 250m of a hospital, these names can't be published because the general public are too dim to understand the issues involved. This thread has nicely illustrated it.

The family are not at liberty to do anything that could harm ST and that includes her dignity. There is no dignity in becoming the focus of a media circus

None of us are free to just say what we like as hate speech, defamation and libel are things punishable by law.

So what business is it of anyone else? As far as I'm aware we live in a free country & this family is entitled to say & think what they like.

If only it were that binary and straightforward..

The reality, per PPs, is that once she and, as will inevitably be the case, the hospital and the treating physicians are identified then we're in the same circus as Charlie Gard etc. Lives of people who are doing their jobs and anyone else in the vicinity is buggered up big time.

The courts have to balance ST's assumed rights and those of her family against everyone else..

So what business is it of anyone else? As far as I'm aware we live in a free country & this family is entitled to say & think what they like.

Up to the point when it harms the patient, and when it harms other very vulnerable people in hospital. This family is in fact being permitted to say what they like, they're just not being permitted to give names.

But it's not the family is it, it is the subject herself that is speaking out.
So she has autonomy & I don't believe for a minute that just because she isn't making the right noises -for the health authority - she sounds pretty sane to me.

I disagree. She believes that her main health problem is Long Covid.

And she might be partially correct. Who knows

The doctors treating her.

Who are ALWAYS RIGHT?
They sometimes aren't. If you believe that doctors & professionals are always right you have far too much faith in authority

An individual doctor will not always be right but if all doctors are agreed on her prognosis they will be.

Don't you think it's just a tad unlikely that several doctors would mistake the effects of a rare mitochondrial disease for Long Covid? Particularly when it started years before the Covid did?

This, of course, is incontrovertible.
Unfortunately, some people will dispute things irregardless of the facts.

One thing which baffles me is why the patient wishes to travel to Canada to receive treatment for mitochondrial disease, when she believes she is actually suffering from Long Covid.

She is actively receiving continual treatment from the NHS. But it cannot cure her or prolong her life long enough for a cure to be developed.

She is able to go elsewhere, but unfortunately she needs the hospital equipment and medical staff in the hospital.

And doctors don't give, 'worst case scenario', they tell patients the likely outcome of a treatment and the possibilities of what can go wrong.

I have arthritis and sometimes have steroid injection, my GP either writes out the possible outcomes or prints out the same (depends which one I see) and goes through it with me and I then sign it.

I think to be fair she is perfectly aware she has the mitochondrial disease, she just thinks the sole cause of her current deterioration is Long Covid and therefore that she will improve enough to be able to go to Canada when the Long Covid gets better.

But that's completely at odds with everything that we know about mitochondrial disease - and long covid!

Yes. That's the reason she is being regarded as deluded.
She has no insight into what is actually happening to her.

Oh dear..
So you've never heard of collusion?
Sorry you sound hugely naive