I wonder if it would be good to ask ICBs a question at their next board meetings about something on this topic - what would be a good question?
Dr Strain said that some special features to treat the condition had been introduced at the RD&E since Ms Boothby O’Neill’s death at her home in Exeter.
These include screened-off areas, silence around patients, blackout curtains, no perfume or aftershave to be worn by staff for risk of triggering a reaction, familiar voices and less intrusive observation.
@Valerie Eliot SmithW need a legal person to explain the possibilities
This telegraph piece is excellentTelegraph article - "No NHS wards equipped to deal with severe ME, inquest hears":
https://www.telegraph.co.uk/news/20...ipped-severe-me-inquest-maeve-boothby-oneill/
Some of the measures Strain's hospital has introduced are mentioned:
I wonder if it would be good to ask ICBs a question at their next board meetings about something on this topic - what would be a good question?
I think I’d do a leading introduction “It was said at a recent Coroner’s Inquiry that there is no specialist service for severe ME in the NHS. Does your area provide any services to patients with Severe or Very Severe ME/CFS?"How many people with severe and very severe ME/CFS live within your Integrated Care System?" (to draw attention to the fact that they have no idea)
"Are the hospitals in your system caring appropriately for patients with severe ME as inpatients and outpatients?"
"Are your services ensuring people with severe ME supported and cared for at home according to their needs and wishes?"
They are not quite pointed enough, shouldn't be able to be answered with a general "we follow guidance on xyz and have no complaints of xyz and have community nurses for patients with ongoing care needs etc etc etc"
ETA:
"Are the hospitals in your system caring appropriately for patients with severe ME as inpatients, ensuring measures including screened-off areas, silence around patients, blackout curtains, no perfume or aftershave to be worn by staff for risk of triggering a reaction, familiar voices and less intrusive observation?"
There was an article yesterday on the Devon area of bbc website uk newsNo coverage by the BBC at all, which is very disappointing. I submitted a complaint - link below in case anyone else wants to also:
https://www.bbc.co.uk/contact/complaints/make-a-complaint
Telegraph article - "No NHS wards equipped to deal with severe ME, inquest hears":
https://www.telegraph.co.uk/news/20...ipped-severe-me-inquest-maeve-boothby-oneill/
Some of the measures Strain's hospital has introduced are mentioned:
I think I’d do a leading introduction “It was said at a recent Coroner’s Inquiry that there is no specialist service for severe ME in the NHS. Does your area provide any services to patients with Severe or Very Severe ME/CFS?
What accommodations are in place for pw S/VS ME please state
Have you trained any staff on treating patients…
etc
On the second day of the inquest into her death in Exeter, Devon, a medical report about Ms Boothby O'Neill written by her GP was read to the court.
Dr Lucy Shenton was left devastated by her death and felt too traumatised to give evidence in person to the inquest, instead providing written statements.
From the GP's report:The GP told Ms Boothby O'Neill's family she had 'never seen anyone so poorly treated by the NHS as Maeve was'
'I am reporting this death due to the complexity of the case. There is currently no guidance about the management of severe ME.
'Several doctors involved in her care stated they do not believe ME is a medical problem. I do not feel I can put down Myalgic Encephalomyelitis on her death certificate without raising this for your personal attention.'
Apparently starts at 9.30am tomorrow
It was 2021, I’d say Covid was at its worst the year before in March 2020I had forgotten that all this happened while Covid was at its worst. It is not that surprising that things might be confused. A lot of people died during the pandemic for reasons other than Covid. But I don't think this in any way alters the evidence that the management was disorganised and probably obstructed and the need for learning as many lessons as possible.
https://www.bbc.co.uk/news/articles/cpd9vm8p2plo - latest BBC article