Sarah-Jayne Lewis - Coroner's report (trigger warning)

J

John_Lobb

Established Member
This thread to discuss the coroner's report relating to the death of a person with ME/CFS, Sarah-Jayne Lewis.
We have an In Memory thread for Sarah-Jayne, to remember her.

Please note that this thread discusses difficult issues - consider if now is a good time for you to be reading this.
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Sarah Lewis: Prevention of Future Deaths Report - Courts and Tribunals Judiciary

Date of report: 07/07/2025 Ref: 2025-0337 Deceased name: Sarah Lewis Coroners name: Debbie Rookes Coroners Area: Avon Category: Suicide (from 2015) | Alcohol, drug and medication related deaths This report is being sent to: Department of Health and Social Care REGULATION 28 REPORT TO...
www.judiciary.uk www.judiciary.uk
 
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Section 5 of the Prevention of Future Deaths Report (my bolding) —

CORONER’S CONCERNS​
​
During the course of the inquest the evidence revealed matters giving rise to concern. In my opinion there is a risk that future deaths will occur unless action is taken. In the circumstances it is my statutory duty to report to you.​
​
The MATTERS OF CONCERN are as follows. –​
​
1) Despite ME having received some more recent attention, the provision of ME services around the country remains inconsistent. I understand that there are still areas where there is no provision. The evidence revealed that a very important first stage for ME sufferers is that they receive a diagnosis and validation for their severe symptoms. Without provision of a service, there remains a risk that this will not occur. I was told that there is still a belief by some that ME is not real and this has a profoundly negative effect on sufferers and their ability to seek support.​
​
2) Historically, there has been little research into ME. As a result of this, nobody knows what causes it, and there is therefore no cure. Whilst I note there has been a small investment recently in research, I was told that this is not enough, and that a perception remains about ME not being real. The resultant effect is that some ME sufferers have no hope that their symptoms will ever improve.​
​
3) Other professionals do not understand ME, what it is or the symptoms it causes. This can be a barrier to those with ME receiving support, or accessing care/treatment they need. A hospital passport is now being utilised at North Bristol, which assists sufferers. However, it is not clear that this is being used in all areas, and there remains a lack of understanding about ME. Education and training about this has not been prioritised.​
​
4) NICE issued update guidance relatively recently but it is not clear whether this has been fully considered or implemented by commissioning bodies around the country.​
 
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It would be really amazing if someone did a study on the history of this. How the same reports have said the same things again and again, and still nothing ever changes. This report could have been written in the late 80s, with almost no changes. In any country.

They knew. They know. They're still doing it.
 
Is this just the second time a Coroner has issued a "Prevention of Future Deaths Report" following the death of a pwme, Maeve Boothby O'Neill's being the first?

The Guardian, Oct 2024
"A coroner has urged the UK health secretary, Wes Streeting, to address the “non-existent” care available to people with severe ME or risk further deaths like that of Maeve Boothby O’Neill.

The Devon coroner, Deborah Archer, who heard Boothby O’Neill’s inquest, also called on the government and NHS leaders to ensure there is more training for medics on treating patients with myalgic encephalomyelitis, and additional funding for research on the condition.

In her prevention of future deaths report, believed to be the first of its kind involving ME, Archer wrote: “The inquest heard that provision of care for patients with severe ME, such as that which Maeve suffered from, was and is non-existent and that being placed on a ward that did not have expertise in her condition made her admission to hospital very difficult for her to endure.”"

Sarah Lewis died in August 2024 but it is right that the secretary of State be asked to respond to the Coroner's concerns.



5CORONER’S CONCERNS

During the course of the inquest the evidence revealed matters giving rise to concern. In my opinion there is a risk that future deaths will occur unless action is taken. In the circumstances it is my statutory duty to report to you.

The MATTERS OF CONCERN are as follows. –

1) Despite ME having received some more recent attention, the provision of ME services around the country remains inconsistent. I understand that there are still areas where there is no provision. The evidence revealed that a very important first stage for ME sufferers is that they receive a diagnosis and validation for their severe symptoms. Without provision of a service, there remains a risk that this will not occur. I was told that there is still a belief by some that ME is not real and this has a profoundly negative effect on sufferers and their ability to seek support.

2) Historically, there has been little research into ME. As a result of this, nobody knows what causes it, and there is therefore no cure. Whilst I note there has been a small investment recently in research, I was told that this is not enough, and that a perception remains about ME not being real. The resultant effect is that some ME sufferers have no hope that their symptoms will ever improve.

3) Other professionals do not understand ME, what it is or the symptoms it causes. This can be a barrier to those with ME receiving support, or accessing care/treatment they need. A hospital passport is now being utilised at North Bristol, which assists sufferers. However, it is not clear that this is being used in all areas, and there remains a lack of understanding about ME. Education and training about this has not been prioritised.

4) NICE issued update guidance relatively recently but it is not clear whether this has been fully considered or implemented by commissioning bodies around the country.
6ACTION SHOULD BE TAKEN

In my opinion action should be taken to prevent future deaths and I believe you, the
Secretary of State for Health and Social Care has the power to take such action.
7YOUR RESPONSE

You are under a duty to respond to this report within 56 days of the date of this report, namely by 2 September 2025. 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

It will be interesting to see the response especially if the Delivery Plan promises little.
 
Binkie4 said:
It will be interesting to see the response especially if the Delivery Plan promises little.
Click to expand...
Actually I was wondering if anyone here has an inside contact who could make it clear that the people behind the plan are at least aware of it and perhaps could be made to at the very least mention it. Not that I expect anything to change, but it has to be made as hard as possible for anyone to pretend like they didn't know how bad it is.
 
rvallee said:
Actually I was wondering if anyone here has an inside contact who could make it clear that the people behind the plan are at least aware of it and perhaps could be made to at the very least mention it. Not that I expect anything to change, but it has to be made as hard as possible for anyone to pretend like they didn't know how bad it is.
Click to expand...

Would Sean be interested in following this up in the Times? It follows the concerns expressed at Maeve's inquest. I think Sean expressed a view that the responses to the concerns were not satisfactory. Now we have a second inquest with Coroner concerns expressed. An article in the Times would put pressure on the Secretary of State.
 
I’m not going to engage with the thread for my own sake, but I just want to point out that the report is inconsistent in redacting the means of suicide.

It is redacted in the first section, but not in the later. I don’t know if this is intended. I hope someone can make them aware so it can be fixed if there is a mistake.
 
I want to express my thanks to the Coroner, Debbie Rookes. I haven't read the whole report, but from the excerpts here, it looks as though she has understood the enormous harm that the psychosomatic paradigm causes and the lack of knowledge about ME/CFS. She has written a strong conclusion and is holding the UK Secretary of State for Health and Social Care to account.

I do wonder though, when pointing out that 'there are still areas where there is no provision' if there is a feeling that existing clinics are useful, there just needs to be more of them. I would like to understand the background to the approving comment about the North Bristol hospital passport. I believe that North Bristol is where Peter Gladwell is based, and so it is the source of a lot of misinformation about ME/CFS, misinformation that makes life harder for people with ME/CFS.
 
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For sure I wouldn't want such clinics to open here. A few have, as best I can tell on the junk BPS model, they only take Long Covid, and although I've only read a few comments on them, they were all very negative. No clinics are better than this, because when it comes time to do something serious the fake clinics have interests they will want to defend.
 
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