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Dr David Tuller: After Maeve Boothby O’Neill’s Death, More Concerns About Severe ME Patients at NHS Hospitals

Countrygirl

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https://www.virology.ws/.../trial-by-error-after.../...

Trial By Error: After Maeve Boothby O’Neill’s Death, More Concerns About Severe ME Patients at NHS Hospitals

28 February 2023 by David Tuller Leave a Comment

By David Tuller, DrPH

I recently wrote an article for Codastory.com about Maeve Boothby O’Neill, who died from complications of severe ME in October, 2021, after three separate admissions to her local National Health Service hospital in Exeter, England. During her hospital stays, she and her family fought with the hospital over the need for tube-feeding or an alternate approach called total parenteral nutrition that bypasses the digestive system altogether.

Conflicts involving malnutrition are also at the crux of a dispute involving Alice Barrett, a current patient in the same facility, the Royal Devon and Exeter Hospital. The issue is the hospital’s tube-feeding policy, which requires patients to be able to sit up at an incline of at least 30% in order to minimize the risk of complications like aspiration pneumonia. This policy conforms to standard medical practice.
The family met with hospital staff today but so far no resolution to the impasse has been found, Debbie Barrett, Alice’s mother, told me.
 

BrightCandle

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1,147
Refusal to treat is the primary way the NHS enacts its systemic prejudice against ME/CFS patients. They have to fight for diagnosis for decades and even then only 10% succeed, then after they have done that fight for every single drug and test regularly being rejected, disbelieved and abused. Then when they finally die the family has to fight to have the disease put on their death certificate.

NICE 2021 was meant to change things, nothing has changed and I am horrified that once again I am witnessing people dying in hospitals and they are no safer than they were a decade ago.

I don't know how to fix this I just need the Department for health for once to take this seriously, its life or death for ME sufferers.
 

Countrygirl

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Here is the Youtube video of the BBC TV piece on Alice's plight.


Just as it was about to be aired we heard from Helen Baxter, a patient advocate, who attended a meeting with the head people of the hospital, and she told us that they have finally capitulated and had agreed to feed Alice at last.
 

Gingergrrl

Senior Member
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16,171
Just as it was about to be aired we heard from Helen Baxter, a patient advocate, who attended a meeting with the head people of the hospital, and she told us that they have finally capitulated and had agreed to feed Alice at last.

Thank God and this is great news. But it is sickening and vile that the hospital only "agreed to feed Alice" b/c they were exposed to the public and basically had no choice.
 

Zebra

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I know I'm "preaching to the choir" here, but this is such bull sh*t.

Yes, a nasal gastric tube (NG tube) used for feeding a patient who is lying completely flat does pose a very high risk for aspiration pneumonia. That's a risk this patient's family seemed willing to take. I believe it's called "informed consent".

Additionally, wouldn't the alternative course of treatment be to place a gastronomy tube (G-tube) directly into the stomach, through the skin and fascia, and therefore reduce the risk of aspiration? My understanding is that comatose patients are often fed this way.

I just don't understand how the NHS repeatedly gets away with this willful ignorance, at the risk of patients' lives. The NHS makes my mom's crappy America HMO look competent!

I know the hospital has relented and agreed to some type of tube feeding for this patient, but my heart still goes out to her family who was frantically trying to prevent their loved one from dying needlessly. I can't even imagine.
 
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5
I know I'm "preaching to the choir" here, but this is such bull sh*t.
...

I know the hospital has relented and agreed to some type of tube feeding for this patient, but my heart still goes out to her family who was frantically trying to prevent their loved one from dying needlessly. I can't even imagine.

I believe it should be a matter for the police and the CPS that the hospital are deliberately and intentionally allowing young people to starve to death rather than giving them the necessary assisted nutrition. This is the taking of a life by unwarranted and completely irrational withholding of easily available medical treatment and, I'm not a doctor or a lawyer, I believe the doctors involved should be prosecuted to the full extent of the law. This need to be treated as what it is.
 

Gingergrrl

Senior Member
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16,171
Good news about Alice! I have just heard from Alice's mum and she says that Alice was fed for five hours today and she slept through it. She was given Nalcrom and a steroid as advised by Dr Weir, and there have been no problems.

Absolutely phenomenal news @Countrygirl and thank you for sharing it. I am so happy for Alice and her family and best news of the day! :star:
 

BrightCandle

Senior Member
Messages
1,147
Huh a consultant was so sure it would kill her instantly so chose instead to let her starve to death. Funny how that works out given the hundreds of severe ME patients that have successfully been tube fed laying down. He needs to be fired he is a danger to patients and the only way to make him do his job was to be in the news.