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> Her deeply religious family have spent their entire life savings on her care and has complained that a “transparency order” requested by the hospital barred t
by SenAnder 3y ago
> Her deeply religious family have spent their entire life savings on her care and has complained that a “transparency order” requested by the hospital barred their ability to give details on the case to help raise public funds.
This is the most vile part of the British legal system - how it casually gags those involved from talking about it.
Edit: Otherwise, I would highlight master_crab's comment [1] - it's not 100% clear what "denied" means from this article. The BBC has more information [2] - it seems there may be a treatment available some time in the future in Canada, and the patient wants to stay on life-sustaining care in the hopes she survives long enough to get it, and the NHS/hospital is denying coverage for said care. "Triage" is disturbingly absent from both articles - it seems the hospital is making the perverse argument that this is in her best interest, and not a simple lack of resources.
While we don't have all the details, it is the hospital-requested "transparency order" that is to blame for this (the BBC article omits it, but Fox reported it [3]), we should apply the opposite of the benefit of the doubt - assume the information we've been legally barred from having is maximally incriminating.
[1] https://news.ycombinator.com/item?id=37385072 https://news.ycombinator.com/item?id=37385072
[2] https://www.bbc.com/news/health-66673511 https://www.bbc.com/news/health-66673511
[3] https://www.foxnews.com/media/uk-court-rules-teen-rare-disorder-incapable-making-decisions-care-begging-live https://www.foxnews.com/media/uk-court-rules-teen-rare-disor...
- deleted 3y ago[deleted]
- darkclouds 3y agoThis link provides a tiny bit more info about her possible treatment as a "experimental nucleoside treatment", so this is going to involve zinc. Another question I have not see asked is why isnt a kidney transplant an option? This might be linked to the condition, but not knowing what is up with her makes it difficult to comment, plus the courts et al have already "anonymised" her as ST, so I dont see why the condition should be hidden unless this is a courts way of accepting there actually isnt any anonymity. Either way without knowing her condition, how can the public even know if she is getting the right treatment from the NHS. A mitochondria disease is like saying a respiratory condition.