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 sorry, but I don’t see how you have taken that viewpoint from my posts.

My feelings are that people have not been honest with ST which has led to an unrealistic belief in her prognosis.

And no, I have not said that I have seen young people “ give up and die” . What I have seen is young people who, when given honest responses and explanations (within the capacity of their understanding) have been able to make guided and valid decisions about their care and their end of life choices, and who have shown understanding of the reality of their situation.

And it may be that that will be the final outcome. People need to understand that no decision has been taken about anything except her mental capacity. There seems to be an awful lot of people on this thread getting worked about about decisions that have not been made.

I could only find the Mirror article, that was on my news feed.
There is also a Mail article that is a copy of this ( or vice versa I suppose)
And one in the Christian Post which I’ve never heard of, (may be American. ?)
I always think of the little lad who was in Southampton hospital, his parents removed him and were arrested in Spain. There was apparently little/ no chance of recovery for him and he is now cancer free. Different illness, different set of health risks and treatments but if ST dies it would be far better for her family if they knew they’d tried every treatment possible.

@AbbeyGailsParty

You are thinking of Ashya King and that just isn't a correct account of what was said or what happened. It is a good example of how the press can give a totally false impression to the public

It is an interesting stance to deny any life extending treatments to anyone with a terminal or progressive illness. You have terminal cancer - no antibiotics for you.

Yet it does happen. There are many circumstances where it is kinder to let an infection take someone than to put them through the worst-case scenarios with cancer and progressive illnesses. In too many cases that means people being subjected to increasing, relentless pain, and/or increasing paralysis so that ultimately they cannot swallow their own saliva and every breath becomes a massive, agonising effort.

When Covid was at its worst, a doctor phoned me to ask whether, if my mother in a care home caught it, she should be taken to hospital. Fortunately for us the decision was easy because she had been making it very clear for some time that she didn't want to be here, and she would utterly hate being in hospital. It would have been merciful for her to be given nothing more than palliative care in that event.

Is it possible to be fully ventilad and still remain conscious?
This is what is confusing me im not an icu nurse im just going off what i was told when my son was in icu they told me if he had to be ventilated and thankkfully he didnt
He would need to be sedated throughout
All the patients i saw who were ventilated were unconscious

I believe 'ventilated' includes CPAP (what Boris Johnson had). Dont' need to be sedated for that.

It absolutely doesn't say what you claim. It just says she does not have capacity. No decision has been made about stopping dialysis.

Not in this case. She has a tracheostomy, which allows full ventilation while the patient is conscious.

Thanks .

Thankyou very helpfu explanation .

If she does stop dialysis she would die very quickly, within a couple of days so imo it doesn't make sense to agree to stop the dialysis but continue the ventilation? Both are life-saving treatments.

@AbbeyGailsParty

Good article on Aysha King here: https://www.independent.co.uk/voices/comment/ashya-king-this-story-isn-t-quite-what-it-seems-9716486.html

Essentially, the NHS removed his brain tumour and planned urgent life saving chemo and radiotherapy. They predicted he had a very good chance of survival but urgency of treatment was important.

His parents preferred a different type of radiotherapy, which can be superior to standard radiotherapy in terms of reduced side effects (and the NHS were sponsoring patient to receive it abroad where this applied) but in his particular case due to the location of his tumour, wouldn't have made much difference. However, Southampton hospital offered to explore every possibility of seeking this opportunity abroad with Aysha's parents.

However, his parents took matters into their own hands when they didn't return with him from planned home leave from the ward. Medical staff caring for him would have had no idea of their intentions and serious, immediate concerns for his wellbeing not to mention concerns that they might not be seeking treatment for his cancer, at all. Understandably, the police were involved as this is very obviously an immediate safeguarding matter.

From this point, Aysha was not taken to a hospital until after his parents arrest, by authorities. He was then admitted to high dependency (in Spain), suggesting he was a significantly unwell child at this time, who his parents until that point had been keeping in a hotel room. It's not clear what if any plans they had in place to seek the treatment they wanted in Spain.

Ultimately, he received their preferred treatment in Prague, and survived. Because the treatment is not more effective than standard radiotherapy, it's safe to surmise he also would have survived had he received the recommended NHS treatment. Noone can comment on the possible side effects, other than apparently the evidence from previous similar cases of either treatment not making much difference with his type and location of tumour.

I've no doubt his parents wanted to do what was best but their behaviour was disorganised and endangered him. They significantly delayed his urgent cancer treatment and withdrew him from medical supervision at a time when he was significantly unwell. Their actions could easily have harmed him and the police response was completely appropriate and did in fact result in him being taken to a safe hospital setting and proceeding to receive appropriate treatment.

Bee in my bonnet about this somehow being warped by bad press and rumour into the NHS and police being baddies that wanted a little boy to die(!)

However, it is a really good example of how media reporting and public discourse can become totally warped and inaccurate on medical topics. Because outrage is what sells and spreads.

It would be very difficult to withdraw ventilation on a conscious patient who has no ability to breathe unaided. That would be horrific for her.
If they stopped offering dialysis at some point she would eventually die from a build up of toxins (ureamia) it depends on whether she has any urine output. might be days up to a few weeks.
in that situation, drugs would be offered to deal with symptoms of congestion, confusion loss of appetite, and restlessness. it would be just for comfort.

No, the nature of the tumour was such that proton beam treatment would have had the same side effects as the recommended radiotherapy and chemotherapy. As you say, ultimately the boy was given proton beam treatment but subsequent reports have demonstrated that it has indeed sadly caused damage. The medical concern was the obvious risk to the boy of dragging him across Europe without medical care. A subsequent review of the case came to the conclusion that the parents' decision to deny their child chemotherapy had reduced his chances of survival substantially. It was actually the UK hospital which saved his life.

Yet again, you have given the facts of the Southampton case wrong. He had every chance of recovery after the lifesaving treatment the Southampton hospital gave him, there was simply a disagreement about chemotherapy and radiotherapy versus proton beam therapy.

It's depressing how often people trot out this case and misrepresent it.

It's not a gagging order. She is a ward of the Court of Protection. So her identity has to be protected.

Unless you have read the psychiatric reports and seen and heard the doctors giving evidence in court, you can't possibly claim that you know better than the judge on the issue of capacity.

Yes, I wondered about that phrase as well. Speech with a trachy is hard.

One of the things we are taught at our capacity training. Is that we have the right to make bad/ wrong decisions, if we have capacity.

I find it difficult to believe that a young lady, capable of doing A levels, Is truly lacking capacity. Really tricky case.

I suppose my opinion is informed by where I live.

In this country, if someone can tell a psychiatrist that they know where they are, how long they’ve been there, what their illness is, the prognosis of their illness and that they don’t give consent to receive certain medications, there’s no way they’d be overruled. Here you would have to sign informed consent and if you were cognizant and lucid and refused to sign a consent, you could not be medicated against your will, the probable exception being if you were posing a danger to someone else.

Does that not suggest that the media are being fed a rather one sided view of things?

Perfectly possible to believe the moon's made of green cheese and get qualifications well above A level.

Reading the judgement is maddening.

'her mother has expressed complete confidence that the treatment will work'

'belief that nucleoside therapy will bring any improvement in her current condition, it is an understandable belief which derives significant support from the beliefs held by her family members'

'she looks to those family members around her for support and reinforcement of her own views. Her mother has refused to contemplate anything other than that therapy will succeed and there can be little doubt that those views will have been communicated to ST.'

'She does not understand sufficient aspects of her illness to meet the functional test of understanding. In particular, she does not understand she has progressive respiratory failure as a direct result of the progress of her mitochondrial disease for which there is no meaningful prospect of treatment. She has a fixed belief that her continuing dependency on mechanical ventilation is the result of the effects from long Covid and the infections to which she has succumbed rather than the inevitable progression of her disease with the impact it has on increasing respiratory muscle weakness'

'she had a very strong view that “she would come through one day”. That view was informed to an extent by both her religious faith and the love and support of her family'

In short, her mother is telling her she isn't dying, the doctors are lying to her, they're actively harming her and she's going to get better as soon as she's overseas. And God's gonna fix it.

As far as my limited understanding on this thread goes.. she’s either going to die where she is or die on the way to Canada?

If that’s the case then I think she should be able to chose where she dies. Why not? The outcomes the same. The only difference is she got to have control over it.

Awful 😢