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

[Sean]

Perhaps. But he has certainly been smart enough to distance himself from ME in the last decade.

If he stays and a biomarker/treatment is found he is going to find himself at the centre of a media firestorm.

He did co-sign the pile of steaming dung that is the Anomalies paper not too long ago, and I have no doubt that there is a formal record of his current views on ME, as an NHS commissioner and general medical adviser bigwig, on the government files, which will become public one day.

He is more than smart and politically astute enough to know what the consequences for him and his reputation and career are going to be if it turns out that ME/CFS is as biomedical as cancer or a broken leg.

 

[Amw66]

Sarah Boothby has posted re inquest on X , linking to her Facebook page post.
Post copied below

"Reporting of Friday 27 September 2024, the final day of the inquest, has been disgraceful. Professor Anthony Hemsley was the only witness. He spoke for several hours to three detailed and comprehensive statements, made between August 2023 and September 2024. He had very positive and encouraging messages from his hospital, the Royal Devon University Hospital Trust (RDUH) in Exeter, for everyone with very severe ME at risk from malnutrition. None of them were reported in the Times. Indeed, it appears neither Archer nor O'Neill have understood most of what they have heard, nor seem to have read much of what they have had in disclosure.

I did not ask for an inquest after Maeve died so that one person who was never involved in her education, health or care, should use the opportunity to generate fear and grief about her entirely preventable death at 27. Far from it. The inquest has heard how, since Maeve died, Professor Hemsley and his team overcome the internal contradictions between clinical guidance on preventing malnutrition in adults and the NICE guideline on ME/CFS (NG 206). All the people who wrote NG 206 are equally responsible for that error.

Neither O'Neill nor Archer have understood the risk to other patients in their summarising of what went wrong for Maeve. Her death would only have been preventable prior to the work done by Hemsley at the RDUH NHS Trust if she had been force fed (as others with very severe ME who lose the power of speech have been elsewhere). Force feeding in very severe ME is extremely dangerous. It is not life threatening but it delays recovery for years, because of the nature of ME.

Maeve only ever had one diagnosis. First it was CFS. Then we discovered her illness was, actually, ME. She only ever had ME. We already knew that NHS UK has no services for anyone severely or very severely affected by ME or CFS. We knew this as soon as Maeve was diagnosed, 9 years before she died. What we did not expect was that she would be refused tube feeding when she needed it. This refusal was because of patient safety.

The inquest has found that Maeve's death was preventable. There was one doctor involved very breifly in her care who knew it, but he did not work in the NHS. Those who do work in the NHS did not have the authority to change national clinical guidance until after Maeve died, because Maeve had died.

Professor Hemsley and his staff have worked very, very hard to prevent further deaths. Based on what they have learnt about ME since the inquest opened (October 2021) they have designed entirely innovative treatment plans, that are as safe as possible, exclusively to prevent malnutrition in very severe ME. These plans have been tested with several other patients at risk of death from malnutrition - throughout the UK - they work and they include IVF at home, in the community.

Hemsley has also tried to have these plans commissioned by NHS UK, so that every hospital would have instant access to them as soon as they are needed. His request has been rejected at every level. He said, ‘I have tried, I went to the very top in asking, and I will not stop trying - as I would try for any patient.'

Without strategic leadership at national level, future deaths can only be prevented if individual patients know they must apply directly to the head of patient safety at the RDUH. The person to contact there today is Donna Seccomb. These plans are not safe without a full risk-benefit analysis for each individual patient and a full assessment of their home circumstances. A high level of nursing skill is required before it is safe to be discharged home. Home is the best place for any person with very severe ME. Most families will want to take on that responsibility. Hemsley and his team have made that a real possibility.

Maeve and I never experienced a doctor responsible for Maeve's care who thought ME 'was not real' as HMAC Archer repeatedly claimed in court. That was Sean's allegation. He did not speak for me, or for Maeve. He speaks only for himself. The country needs better from its leading newspaper."

ETA link to Xitter post
https://twitter.com/user/status/1840845880590549490

 

[Hutan]

Those who do work in the NHS did not have the authority to change national clinical guidance until after Maeve died, because Maeve had died.

I am certainly not an expert in this, but my understanding is that the NICE Guidelines are only suggestions, not mandatory requirements. That is why they are called 'guidelines', and they have 'recommendations'.

Evidence-based recommendations for the health and social care sector, developed by independent committees, including professionals and lay members, and consulted on by stakeholders.

My understanding was that doctors are free to deviate from guidelines if they think circumstances require it, and to do things that aren't in the guidelines. So, while the people in the NHS did not have the authority to change the guidelines, they did have the authority to not follow the guidelines or do additional things in the interests of their patient.

 

[Ash]

I am certainly not an expert in this, but my understanding is that the NICE Guidelines are only suggestions, not mandatory requirements. That is why they are called 'guidelines', and they have 'recommendation'.


My understanding was that doctors are free to deviate from guidelines if they think circumstances require it. So, while the people in the NHS did not have the authority to change the guidelines, they did have the authority to not follow the guidelines in the interests of their patient.

Are these NICE feeding guidelines?

Or is this about NICE ME/CFS guidelines?

 

[Hutan]

I think Sarah is talking mainly about the ME/CFS guidelines having a problem:

The inquest has heard how, since Maeve died, Professor Hemsley and his team overcome the internal contradictions between clinical guidance on preventing malnutrition in adults and the NICE guideline on ME/CFS (NG 206). All the people who wrote NG 206 are equally responsible for that error.

but my comment about doctors being able to deviate from the guidelines in order to properly care for the patient in front of them applies to any NICE guideline.

I don't think the people involved in the development of the ME/CFS guidelines should be feeling bad. The guidelines were a considerable advance, and I don't think we could expect that, even without all of the differences of opinion in the people on the committee, that every bit of information about taking care of people with ME/CFS could be included in this version.

 

[Jonathan Edwards]

I find it hard to make out what is being said here. The NICE Guideline in place when Maeve died was the 2007 Guideline. I doubt it said anything about nutritional support. The subsequent guideline in 2021 doesn't say anything very specific other than that ME/CFS patients may need support. I am not sure what 'contradictions' are being suggested.

 

[Hutan]

Yes, it is hard to understand.
Just for clarity:
The 2021 NICE ME/CFS Guideline is NG206.
The 2007 NICE CFS/ME Guideline was CG53.
Even the 2007 Guideline says

Treatment and care should take into account patients' individual needs and preferences.
People with CFS/ME should have the opportunity to make informed decisions about their care and treatment.

 

[SNT Gatchaman]

She does say "since Maeve died" and references NG206 specifically. NG206 (NICE 2021) simply refers on to CG32 for management of malnutrition, leading with "Monitor people with severe or very severe ME/CFS who are at risk of malnutrition or unintentional weight loss". That doesn't seem internally inconsistent to me.

 

[Jonathan Edwards]

She does say "since Maeve died" and references NG206 specifically. NG206 (NICE 2021)

Yes, but she seems to be referring to the NHS clinicians at the time of Maeve's death being unable to act (Those who do work in the NHS did not have the authority to change national clinical guidance until after Maeve died) because of some guideline - presumably 2007, although I suspect there is nothing in it on feeding. The suggestion is that the death was preventable in theory but that NHS clinicians were unable to act appropriately.

It is a pity that the debate in the public domain is so far removed from what the real problem is - the resistance amongst gastroenterologists and physicians in general to taking responsibility for ME/CFS patients and providing the same can as others get.

 

[Amw66]

https://meglobalchronicle.wordpress.com/2024/09/06/news-about-children-with-me-in-the-uk/

Extract - seems to be attributed to Drs Speight and Weir

Firstly, in nearly every case the management of each case has in our opinion been markedly suboptimal, especially by the clinicians in their local hospitals. We will attempt to describe common deficiencies shortly, but before we do it is worth mentioning two relevant points.

1) Once I (NS) gave a talk to the nursing staff on our paediatric ward to prepare them for the imminent admission of a very severe case. When I had finished one of our staff nurses said “So what you are saying is, everything in our previous training as nurses is wrong for this condition”. I warmly agreed with the truth of her observation. Subsequently I realised that it could have been applied with equal relevance to doctors, psychiatrists, physiotherapists and others

2) I have often observed that “Those doctors whom God wishes to drive mad, he first confronts with a patient with ME” Our experience with very severe ME has led me to add to this by saying “Those that have not yet gone mad, God then confronts with a case of very severe ME and this usually does the trick”

 

[Nightsong]

The Times view on the chronic fatigue syndrome inquest: Respect ME

This also appeared as one of the leading articles in the print edition (p25) of today's Times:

 

[MeSci]

Do you know who wrote that?

 

[Nightsong]

It was a Times leading article, so unsigned. Full page attached.

 

[Robert 1973]

Letter in yesterday’s Times from Ilora Finlay & Peter Barry: https://www.thetimes.com/article/88...b?shareToken=52a475cd932e0c54aa5ded71240f6c5c

https://twitter.com/user/status/1841987356812796415

Letter in today’s Times from Charles Shepherd: https://www.thetimes.com/article/ec...f?shareToken=427b8c1c16be57c3152f615c036579bc

https://twitter.com/user/status/1841990738659443166

 

[RainbowCloud]

Thanks of the note, Hutan. Hopefully the discussion has run its course.

I realise this is a confusing and uncomfortable area. Perhaps I would just add that on Thursday I took a tube train to exchange debate here about advocacy in the wake of Maeve's inquest, for chatting to the rheumatologists at a teaching hospital who should be joining that advocacy. They had not heard of Maeve, or of microclots, or really any of what we discuss. Someone said 'yes, chronic fatigue syndrome and Long Covid are similar in many ways: difficult conditions to manage' - likely oblivious of the 2021 NICE Guidelines and the fact that nobody is even attempting to manage because referrals are no longer accepted by rheumatology.

The gulf in communicating the significance of Maeve's death to the people who we need to do something about it is hard to comprehend. I think it is worthwhile picking through the things that might contribute. Maybe we are no further forward, but maybe some of the people present at the inquest will see things on this thread that they might not see otherwise. Next Thursday I intend to propose doing a Divisional meeting presentation on Maeve's life, death and inquest.

Thank you for doing this – and much more such as your Qeios piece – your dedicated advocacy gives me hope!

 

[RainbowCloud]

I wanted to comment on the stat that we’ve heard in the inquest about the hospital seeing around 5 very severe ME cases per year. I’m sure that’s true but it concerns me that people hearing that will conclude that there’s such little demand for specialist services for severe and very severe patients that funding it isn’t a priority. I fear they won’t understand that the stat masks how many severe and very severe pwME nationwide desperately need the same help but feel they are safer not requesting it (I wonder what that number is?)

I’m concerned that it will take years before we can safely ask for the help we need. If Maeve had been able to request informed, unpredjudiced help earlier, would she have starved to death? How many more people will reach the same fate because they need help now but don’t feel it’s safe to ask for it? (Personally, I worry I could be one of them.)

I hope the Section 28 notice can bring some desperately needed progress.

 

[Ash]

I wanted to comment on the stat that we’ve heard in the inquest about the hospital seeing around 5 very severe ME cases per year. I’m sure that’s true but it concerns me that people hearing that will conclude that there’s such little demand for specialist services for severe and very severe patients that funding it isn’t a priority. I fear they won’t understand that the stat masks how many severe and very severe pwME nationwide desperately need the same help but feel they are safer not requesting it (I wonder what that number is?)

I’m concerned that it will take years before we can safely ask for the help we need. If Maeve had been able to request informed, unpredjudiced help earlier, would she have starved to death? How many more people will reach the same fate because they need help now but don’t feel it’s safe to ask for it? (Personally, I worry I could be one of them.)

I hope the Section 28 notice can bring some desperately needed progress.

Absolutely @RainbowCloud everything you say. X

 

[SNT Gatchaman]

I wanted to comment on the stat that we’ve heard in the inquest about the hospital seeing around 5 very severe ME cases per year. I’m sure that’s true but it concerns me that people hearing that will conclude that there’s such little demand for specialist services for severe and very severe patients that funding it isn’t a priority.

For reference that's in the ballpark of our national annual child cardiac transplant numbers (liver transplants probably a few more). And those services are most definitely funded. It's a matter of political will.

 

[MrMagoo]

I wanted to comment on the stat that we’ve heard in the inquest about the hospital seeing around 5 very severe ME cases per year. I’m sure that’s true but it concerns me that people hearing that will conclude that there’s such little demand for specialist services for severe and very severe patients that funding it isn’t a priority. I fear they won’t understand that the stat masks how many severe and very severe pwME nationwide desperately need the same help but feel they are safer not requesting it (I wonder what that number is?)

I’m concerned that it will take years before we can safely ask for the help we need. If Maeve had been able to request informed, unpredjudiced help earlier, would she have starved to death? How many more people will reach the same fate because they need help now but don’t feel it’s safe to ask for it? (Personally, I worry I could be one of them.)

I hope the Section 28 notice can bring some desperately needed progress.

That is just one hospital though. And 5 was an average, I think they said they had actually seen 7 in the past year?
And there are 42 Integrated care boards in England, so if each has 7 patients 7 x 42 = 293. Just in England.

 

[Ash]

For reference that's in the ballpark of our national annual child cardiac transplant numbers (liver transplants probably a few more). And those services are most definitely funded. It's a matter of political will.

Yes.

I feel five is plenty enough. More than I would have expected perhaps. Also if it were fewer than this, it still remains the case that every patient is a person worth caring for. Ethics first.

Strategy second. This is one decent way medicine can evolve and develop skills which will be transferable, other patients will benefit from less noise and light and having their individual needs considered.

Still I do think it can be a problem to look at the numbers of presenting patients in these situations as a way to measure the scale of the situation.

People need family support to get as far as a hospital bed whilst very sick with ME. We don’t know how many people suffer like this without support behind them and are diverted into psychiatric pathways and may suicide before reaching the feeding tube stage.

Or suffer medical prejudices and abuse early on in course of illness, avoid healthcare altogether. May take their own lives when it becomes obvious a physically punishing hospital environment and the psychological trauma of being treated like an unwanted object by the staff you will be utterly dependent upon to stay alive is a growing risk.

We’d all hope for good care. Hospitals and community medical services do give good care sometimes. Yet we often learn to stop expecting the best early on.