Dr David Tuller: UK Health Care Professionals Appeal to Health Secretary for Quick Action on Poor ME Care

Countrygirl

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https://virology.ws/2024/09/19/tria...h-secretary-for-quick-action-on-poor-me-care/

Trial By Error: UK Health Care Professionals Appeal to Health Secretary for Quick Action on Poor ME Care​

3 Comments / By David Tuller / 19 September 2024
By David Tuller, DrPH

Tuesday, September 17th, was World Patient Safety Day. (I didn’t know that either.) In the UK, more than 200 physicians, nurses and other health care providers and professionals marked the occasion by issuing an appeal—in the form of a letter to Wes Streeting, Secretary of State for Health and Social Care since–about the dire state of care for ME patients within the National Health Service. The letter highlighted in particular the plight of patients with severe ME.
The inquest this summer into the death of Maeve Boothby O’Neill, who died in Exeter three years ago at the age of 27, drew widespread attention to the abysmal situation for such patients at NHS hospitals. The presiding coroner, Deborah Archer, ruled that no individuals were responsible for causing or contributing to Maeve’s death, although she acknowledged that some of the decisions made were concerning. On Friday, September 27th, she will hold a hearing to consider whether to issue a report with recommendations to prevent future deaths.

As a Times article about this week’s letter to Secretary Streeting noted:
“A lack of NHS specialist services was highlighted at the inquest of Maeve Boothby O’Neill, who died in 2021 aged 27. An inquest last month concluded that she died from malnutrition caused by severe ME, with the government acknowledging that Boothby O’Neill ‘fell through the cracks’ and was “repeatedly misunderstood and dismissed” by the NHS.”
Dr Binita Kane, a respiratory physician in Manchester, co-organized the letter with #ThereForME, a campaign launched by carers for patients with severe ME associated with Long Covid. Dr Kane posted a thread about the letter on X (the former Twitter). The first listed demand is “acknowledgement from the very top of government…that gaps in NHS services for ME are resulting in serious patient safety concerns” and a commitment “to taking action.”
I have posted the full letter below, along with all the signatories. (I haven’t counted them, but the article in The Times says there are 202.)
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Dear Secretary of State,
We write to you on World Patient Safety Day to express our concerns about the safety of patients with Myalgic Encephalomyelitis (ME) within the NHS.........
 

Carl

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I don't know when that photo was taken of Maeve, I would guess it was quite a long time ago because sufferers usually have markings and discolouration around and under the eyes which that photo doesn't show. She looks very well in that photo which can be a problem when it comes to the medical profession. If a person doesn't look like they are dying with a leg hanging off or something like that then people are frequently dismissed.

BTW a nasogastric feeding tube cannot help ME sufferers because the problem lies in the stomach. There is no real difference between a feeding tube and thoroughly chewed food in terms of the problems the food causes ME sufferers bodies. Science and medicine know so little about how the human body really functions.
 
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