Maeve Boothby O'Neill - articles about her life, death and inquest

Jonathan Edwards said:
Maybe S4ME should make a formal request to Dr Hemsley to share his protocols with the patient community. (If I asked I might be seen as in competition.)
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If it is a sensible protocol, that therefore has the possibility of saving lives, then it being restricted to one local hospital is obviously less than ideal. However, I would note that we aren't a a patient organisation as most people would recognise, so not sure why this Dr Hemsley would think it would be a good idea to give the details to us. Sounds more like a job for someone from AfME or the MEA - actually, thinking about it shouldn't David Strain be able to acquire it rather easily?
 
Andy said:
not sure why this Dr Hemsley would think it would be a good idea to give the details to us.
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I agree. But I have been having conversations with various people involved in charities and the patient community for nearly a year (including copying in David Strain) and so far have not had any inkling as to what the protocol might be. When I talked with Sonya I didn't;t get the impression she was likely to ask for it. Extended discussion with Charles has not led in that direction. It was suggested that I might be able to rustle up a protocol!

I think part of the problem is that there aren't really any active physicians in the charities. David Strain has been adviser to AfME but seems increasingly to be involved in other things. I assume he was involved in the Exeter developments but I have not been given any information.
 
Sasha said:
Is this an unsolvable problem, then?
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Maybe not necessarily? A physician who isn't an ME/CFS specialist but is genuinely interested in it could advance their learning a lot by linking up with a charity.

Whether anyone has the bandwidth to do something like that voluntarily, given the pressures many NHS doctors are under, is a different question of course.
 
"NHS to review ME services after death of Maeve Boothby O’Neill: Health minister and Nice commit to work to improve patient outcomes after landmark inquest" (The Times):
Responding to Archer this week Sir Stephen Powis, national medical director of NHS England, said that a “stocktake of existing CFS/ME services in England is being undertaken as an initial step”. He said a specific working group had also been set up to determine if extra support was required.
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Nice will also review the evidence on dietary management and strategies such as tube feeding for patients with severe ME, to examine whether its guidelines need amendments.
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Meanwhile, medical schools are being encouraged to provide undergraduates with direct patient experience of ME, and an NHS e-learning package about the condition will be promoted to all of them.
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Link | 12ft
 
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Nice will also review the evidence on dietary management and strategies such as tube feeding for patients with severe ME, to examine whether its guidelines need amendments.

If that is so, it is a major policy change from Peter Barry's position until now that a review was not practicable - at least as I understand it.

Perhaps some discussion has occurred behind the scenes.

Edit: looking at the article and Sean O'Neill's comment I would be cautious about whether or not the involvement of NICE will be substantive.

It is also disappointing that the ME/CFS action plan is further delayed - even if it does not amount to much anyway.

I also wonder who will be involved in a further working group to look at feeding problems. Everything seems very close to the chest.
 
While Sean recognises as positive that the Coroner has been listened to, he describes the responses as "lacking substance".

He said: “It is a positive sign for ME sufferers that all these public bodies have listened to the coroner and responded to her findings.

“However, the actual responses are lacking substance. There is no sign that anything will be done to tackle the coroner’s main concern — that care provision for people with severe ME is ‘non-existent’ in the NHS. And it is upsetting to hear that the Department of Health’s delivery plan on ME appears to have been delayed again until March 2025 — almost three years after work on it began when Sajid Javid was health secretary.”



I wonder if there will be any measures put in place to assess progress in the issues identified by the Coroner. In her section 28 report, the Coroner said- see page 90 this thread-


"ACTION SHOULD BE TAKEN
In my opinion action should be taken to prevent future deaths and I believe you have the power to take such action.

YOUR RESPONSE
You are under a duty to respond to this report within 56 days of the date of this report, namely by 3rd December 2024. I, the Coroner, may extend the period.

Your response must contain details of action taken or proposed to be taken, setting out the timetable for action. Otherwise, you must explain why no action is proposed."

I wonder if the MEA to whom the Coroner's report was sent will respond.

There is no reference to timetables in the Times report.

The print copy of the Times, p29, also contains this article.

Apology for some lack of clarity. I am struggling today.
 
Adam pwme said:
Mentions the response to the prevention of future deaths report
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Anna Gregorowski as one expert (most replies from seemed to assume BACME are the specialists we are short of which confused me and she suggested there were just ‘gaps’ in provision where people don’t have ‘those specialist services’ - yet is hospital care better or worse where a BACME person or service has been involved?)

there was a sense of suggesting the issue was just the rollout being too slow rather than it being safe,useful, the right thing and people

and Chris Ponting (who thank goodness was able to make the point about potential and past reported harms from services like GET)

I’ve been concerned for a while tgat the call for specialist inpatient would get twisted into services that people dread even more being rolled out by those who were involved in the old stuff putting their old wine in new bottles or pretending the problem is someone else or other services rather than coming from errant advice they may still believe in just changed the name of slightly etc
 
BACME plan - to assert we need more of the (same, old, bad) services. What on earth was the BACME chair doing be touted as an ME expert on national TV? This is terrible. The press are being given a deceptive fiction story about NHS services for pwme, a damaging story for ME patients.
 
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That was a very good piece. The interviewer is sympathetic and knowledgeable about ME/CFS. I endorse @bobbler's thanks to @Chris Ponting, and the concern about the BACME input. Although Anna Gregorowski was saying that ME/CFS is not psychological, she was suggesting that the problem is just not enough specialist services (and a need for better services related to nutrition in people with severe ME/CFS). There was no admission that it is BACME's members who have contributed substantially to the stigma and poor care of people with ME/CFS.
 
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