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

Let me ask again; how is she being legally prevented from seeking alternative treatment?

Of course she isn't. Some people are a bit hard of thinking on this thread.

I think so many people on MN and in the general public haven't read or understood what is actually happening.

In extremely simplified terms, a young woman with an extremely rare mitochondrial disease has been in ICU for over a year.

She is unable to breathe, or eat independently. Shes's essentialally paralysed and her hearing and sight is compromised. Along with ventilation and feeding, which are artificial medical interventions to keep her alive, she is also receiving haemodialysis and we assume, a number of medications.

In the last year she has experienced respiratory arrest more than once. And extreme and intrusive medical intervention has prevented her death.

Her medical team and all the available experts in her disease agree she is in the terminal stage of her disease. She will die and any intervention will just prolong it and could be harmful and destructive.

So the medical team propose they move to palliative care to make her as comfortable as possible while she dies. Which could be days, weeks or months.

She and her family oppose this as they think there is a possibility of experimental treatment in another country. They don't accept she's going to die and not only think experimental treatment may give her a chance, her Mum seems to have full faith in a cure.

All avenues of experimental treatment in another country were explored by the court. There is none available. And even if there was, the medical opinion is she would not survive the journey.

This isn't a court case where she is being gagged, or prevented from seeking alternative treatment.

It was a court case to assess her capacity to refuse palliative care. And the fact that she and her family seemed to be refusing palliative care because they have an unrealistic or 'delusional' hope that her death can be prevented by travelling to another continent where no healthcare provider is currently offering her experimental treatment, and ignoring the fact she is too unwell to travel in the hope that she'll improve enough to do so, despite every medical expert saying she won't.

Thats the only issue that's gone through the court at this stage. Her capacity, and as an aside, her families capacity, influence and agreement to her being stepped down from intensive care to palliative.

Your link is talking about travel with a tracheostomy tube rather than being on a ventilator. Its the ventilator that will be the issue not the tracheostomy. Not all people with tracheostomy require a ventilator so the advice is aimed at those. These are children who lead a reasonably normal life. ST can not even be moved to another ward due to the level of support she needs.

Yep.

Many people live with a tracheostomy tube, after throat cancer surgery for example.

It is not in any way the same as only being able to breathe via artificial ventilation via a tracheostomy tube.

She isn’t. If you were to read the judgement, it states that the doctors are happy for ST to leave and have treatment in either the US or Canada. The doctors have given details of ST’s condition to assist with this. The problem is that ST hasn’t been accepted by any of the US or Canadian clinical trials. Also that she probably isn’t well enough to travel anyway.

An excellent summation.

If she is not allowed by the court to identify herself, how is that not being gagged ?

No, that's absolutely not what I mean!

See:

Travelling abroad with your ventilator - Sheffield Children's Hospital

https://www.google.com/url?sa=t&source=web&rct=j&opi=89978449&url=www.sheffieldchildrens.nhs.uk/download/824/ltv/8365/travelling-abroad-with-your-ventilator.pdf&ved=2ahUKEwioxtSA7qKBAxWRVEEAHacZAC4QFnoECA0QBg&usg=AOvVaw3xEil_eU6ZMM9u1xisQ7cf

I'm not disputing that she is likely too unstable to travel, but people on ventilators can and do travel by air.

Because this particular ruling went through the court of protection which is designed to protect her.

As it's a very initial stage of making a legal judgement on her capacity.

What she and her family want (and may happen depending on court rulings from now on) is that she's named, a media circus and a go-fund me happens to attempt to raise funds for...we don't know right now since no experimental research project is willing or able to take her and even if they were, would they support her travelling there?

So it's not that she's being gagged as that isn't happening and she may go public in the future but likely anyone that really understands her case or cares, thinks a media circus of uninformed cheerleaders and grief vultures is not in this dying young woman's best interests.

@Mysleepisbroken those links are referring to non-invasive ventilation often called NIPPV. It's totally different to being ventilated via a tube down your throat and the machine actually taking all your breaths for you.

I've never seen anyone with invasive ventilation outside an ITU environment.

A lot of families with terminally ill children raise money and have public support beause having a terminally ill child can be expensive in many ways (putting aside any experimental treatment). Parents often can't work and it can take an incredible toll on family's finances. There is also often a lot of emotional support from the public that helps people cope and deal with the impending death of a child. I do think it is unfortunate that they are denying the family the emotional and financial support that identifying her could bring. I get they don't want peple protesting at the hospital and they don't wnat to be identified and harrassed online or in person as the masses tend to be in just about every situation that is public but if you go on go fund me, there are countless campaigns for sick and dying kids.

I,ve transferred many very unstable patients on full invasive ventilation. It can be done.. flights are trickier because pressure/altitude affects oxygenation.but not impossible. The bigger issue would be the dialysis.

It says she has a trach permitting her to speak?

She is conscious, alert, not sedated, and able to communicate.

Well, no, that's how the tabloids are describing it. It's obviously terminology that they are much more comfortable with and that they think their readers will understand.

Identify her and within a day or two you'll have the same morons who joined 'Charlie's army' and 'Alfie's army' and 'Archie's army' harrassing the staff at the entrance to the hospital, blocking access for others and making life miserable for anyone else being treated at the hospital.

The unfortunate staff would quite rightly be dreading this scenario.

I do think it is unfortunate that they are denying the family the emotional and financial support that identifying her could bring

It's true about the potential for financial support and not for me to presume what the family would find comforting or otherwise, but there are staff and other patients in that hospital - does anyone really imagine they'd appreciate the level of harassment we've seen too often?

As already said it would be handy if those who've caused this before could reflect on what they've done, except I doubt they have the sense, and nor is there much point in hoping they might be sensible this time

What alternative treatment do you say they are preventing her from seeking?

Suppose, for example, a patient in this girl's position was convinced that if she could just take off the ventilator and walk out of the hospital a flock of fairies would come down and save her, the hospital should facilitate that, knowing that the actual result is that she will die of oxygen starvation before she's even got out of bed? Because pursuing a course of treatment that doesn't exist is directly comparable.

What exactly is your evidence that all of the experts, each and every one of them, is biased?

You can have a speaking valve on a trach while on invasive ventilation.

That she can tolerate this at all just shows how incredibly unwell she is and how little she can move her own muscles.

So, yes she is being gagged. If she is being prevented from identifying herself, she is being gagged.

Being gagged means not being allowed to talk to reporters about your case at all, and the papers being forbidden to publish anything whatsoever about the case. Given that we know about it, she's talked to the Mail, and indeed that the judgment has been published through an official website, she has not been gagged.

She has not been allowed to say who she is. That is a form of gagging.

I wouldn't have thought that, say, two hundred and fifty grand from a Gofundme and sales of water bottles with photos of your child's face on them is really that much of a consolation if said child dies in the process of trusting what you said was right and demands disconnection from the machinery that is keeping her alive.

It would be like 'OK, so she's dead because she believed what you said and not the doctors, it was painful and terrifying and happened in front of the rest of the ward and you'll never get that image out of your head or the fact that you were responsible for making her death so unpleasant - but look, you haven't spent all the money; get yourself something nice'.

According to the experts, she was actively dying at the time they gave testimony and they didn't expect her to live beyond a few days. They also said that back in February and April. People, even children die in ICUs often. I am not sure her death will be any more or less pleasant if her name and identity are revealed.