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

I'm not sure of his title, but he is/was head of the hospital in some capacity. Since he wasn't directly involved in Maeve's care, I guess the thought is he can't really offer insight into specifically what happened in her case. At first it seemed like she planned to issue her report tomorrow and then hear from him. Since now she's waiting a week, my understanding is that he would be testifying, or possibly, in the next phase involving issuing a protective order after the fact-finding report. In other words, I guess he can shed light on policy shortcomings or what should be done but not on the specifics of Maeve's care.

 

I missed the start of Sarah’s questioning but when I joined they were talking about the prescription feeds.

I won’t go into detail as I wasn’t able to carry on taking the notes well enough. But there were some quotes which stood out:

C - is it manifestation that things (body functions)go and come back?
SB - it is like the weather, you can’t predict it. If you do things while symptomatic you are guaranteed to make it worse

C- do you think NG should have been tried then?
SB - no , happy for speedy discharge as we then had correct nutritional supplement. But we weren’t told the prescription so we assumed we had the right amount

this was in reference to the fact that they didn’t have the correct calories prescribed as the hosp thought she was still eating and was using the prescribed drinks to supplement.

SB - I expected social care at home when she was discharged
C - you would have needed 24/7
SB - msg from Juliette Hill said that’s what I would get

other SB quotes
- my biggest regret is that we didn’t resolve the prescription at home
- we wanted a meeting with the health team and the social care team

quote from Maeve which Sarah read after in her diary
- I am not doing graded exercise for the tube
I will sit up so they can put the tube in but I’m not going to practice as it will set me back

SB explained practicing sitting up so she could prove she could tolerate the feed is essentially what GET is

 

I asked them about this and they will not be made public.
You can request them if you are a properly interested party.
I got the impression that doesn’t include members of the public

 

and shouldn't it be encumbent on the person trying to claim no capacity to show that they haven't bombarded them with complex questions, or failed to wait (if something isn't an urgent issue eg following an accident) if someone is saying they are in sensory overload at that point and so need time and ideally less sensory overload.

It feels like taking advantage at best to not offer this, but given the seriousness of all this to someone's life it really does need to be understood as far bigger than that. It's about autonomy being unreasonably removed, due to 'hassle' (I understand it is more than that given staffing issues, but in what actually needs to be implemented it isn't 'impossible')

If you imagine the population of people who get ill each year, and how when they are that ill and are then in the environment said people are placed under (I guess it might be unusual for ME because of all the bullying and misunderstanding potential) then the theoretical bar-lowering they are talking about by suggesting 'brain fog' would lose you your liberty/right to make decisions about your own treatment and body, without attempting adjustments to work around that and find a 'good moment' is theoretically dragging in a so much larger segment of the population than was ever intended to be under that measure.

So it isn't just scary, but I wonder really what the implications are.

I remember it being uttered that good law is theoretically tested by most good citizens not noticing it or something. I'd suggest there is some similar spirit intended for this. Lowering it to a point where someone 'foggy' could end up under serious implications doesn't sound right in relation to this. particularly not when they themselves are asking to do it at another point so are self-aware.

 

Jonathan makes a very good and important observation here which has implications for the patient as well as HCP’s.

On a personal level I have found following this Inquest very challenging as the experiences of M and her family so vividly match the challenges and experiences that my late wife and I as her main carer and chief advocate went through in the final 9 months of her journey with ME/CFS in 2019. It makes me hesitant to share the following as it attempts to confront some harsh realities and you may prefer not to continue reading this post at the present time.

Spoiler: Spoiler

Vanessa was enormously lucky to enjoy the support and care offered by Dr Weir from 1989 right up until her death in 2019. He wrote countless letters explaining ME to her GP’s and other Doctors and supported her in her successful claims for sickness and other benefits. We found his most important and only effective medical advice to Vanessa was to live within her energy envelope.

When she started losing weight and developing other more debilitating intolerances to things in her environment he referred her to another specialist, a Professor Brostoff who specialised in food and chemical intolerances and ran the only such clinic in the UK. He retired a long time ago and the clinic retired with him. The best and only effective Medical advice received from Professor Brostoff was to identify the foods/chemicals etc causing problems and remove them as much as possible.

Like all the other Doctors involved with Vanessa’s care over the years they naturally, were keen to find more effective treatments and suggested various to Vanessa who agreed to try them as she wanted her life back. Without exception they all made her worse and in fairness to Dr Weir and Professor Brostoff they were quick to recognise this and told her to stop the treatments. Sometimes it took her a long time to recover from the relapses these treatments provoked. They were a burden to her and to myself as her main carer as we had to pick up the pieces, which was no mean feat given the depth of some downturns resulting from these informal trials to which she consented in the full knowledge of the risks.

This is especially brought into high relief when your previous successful strategies of avoidance of over expenditure of energy and when the removal of foodstuffs/chemicals etc and the development of further intolerances reach a stage where it is impossible not to be overwhelmed by it all and find the environment you are in impossible to cope with.

I understand M’s wishes not to undertake further treatment without a medical and social care strategy for dealing with failure as that is where the journey took us. The medical team looking after Vanessa at the end did not understand that request for a treatment failure plan. Vanessa then asked for Hospice Care in the knowledge that the Medical profession did not have a clue as to the causes of her ill health and that any treatments administered would likely make her worse. They did. She died within a few days of admittance to the Hospice.

An important reason for her asking for Hospice care was to get support and care for her family, who carried a heavy burden caring and advocating for her in the mess that surrounds Societies reaction to the illness ME/CFS.

The decision about what medical care to accept or refuse is very personal to the Patient as only they can decide both the acceptable level of risk and the burdens resulting from any failure that is acceptable to them in the circumstances in which they find themselves.

I am so grateful to M and her family for highlighting these issues in the public arena of this Inquest. Only by us all looking deeper will better answers emerge.

 

I’ll take a look at twitter properly. It seems Sarah and Sean have finished and been released. The proceedings have finished early today.

Initial tweets show Sean made a powerful statement with ref to S Wessley

 

One of them is clearly that you can be deprived of your liberty as well as your autonomy if you give the wrong answers.

We probably need to start from the position that anyone with severe or very severe ME/CFS who is in hospital is experiencing a level of stress potentially amounting to duress, and that needs to be accounted for in any assessment of capacity.

Maybe there could also be more conversations among pwME about appointing Health & Care attorneys, if they have someone who could act for them. Assessing someone's capacity when a lasting power of attorney has been registered would be have to be approached more formally; it won't stop hospital staff making assumptions about patients or casting aspersions against family members, but because it has legal status, it's more difficult to frustrate.

Edited to add word.

 

Tomorrow they will clarify the position on Fludocortisone

Will look at submissions on article 2, and consider the Coroners potential conclusions




I’ve seen tweets that the Coroner has said the Press are present, and of course the snapshots of today seem heartbreaking, so expect some articles later

 

Coroner warns that there won’t be a decision soon, not in August, maybe in September

 

Sean O’Neil gave evidence. He had two statements to read in but was too emotional so the coroner read them. The first I had heard before as I think he used this as part of an article he had published recently.

The second was critical of the medical establishment and their beliefs of the psych cause. I wasn’t quick enough to take notes but he identified Simon Wesley by name and gave context with PACE trial and influence on how ME perceived in medicine.

if this is not already published then I imagine it will be soon or perhaps @dave30th will be able to publish

Now concluded for today

tomorrow:
- Kate Jenkins
- will read Lucy Shenton letter
- submissions on article 2 (legal stuff)
- conclusions that coroner should consider at the end of inquest
- clarify position about fludrocortisone ( have received letter from someone)
- attempt to agree dates for Dr Hemsley to give evidence ( it will be a whole day and not in the next two weeks so probably September)”

 

I’ll start with Sean’s statement as there are less tweets.

Sean described how he was diagnosed with leukaemia and he thought Maeve would outlive him.

“ I always thought she’d get better”

“the daydreams are now replaced by memories”

 

Sean’s statement shows the difference between his healthcare for cancer and Maeve’s treatment for ME

“had she presented with other symptoms I believe she’d have been treated differently”

 

Sean explains about contact with Dr Weir and asking him to make a home visit.

Sean was unable to see M in 2021 as she was too ill
He and Maeve were both in hospital at the same time and in text contact

 

It doesn't sound from this as if they can't (it seems to be the audio recording of proceedings that are protected), but that doesn't mean publishing it in full is necessarily justifiable. I wouldn't, but I probably can't set out why with any clarity.

 

Fludrocortisone is ineffective for ME/CFS. Double-blind RCT: https://jamanetwork.com/journals/jama/fullarticle/193426

There is no evidence that inability to sit up is due to low blood volume or that blood volume expansion can reverse orthostatic intolerance. Treatments promoted for POTS like fludrocortisone, high-sodium diet, IV saline etc. are an alternative medicine hoax.

 

Over to Sarah Boothby. She made a statement, Coroner asked if she wants to alter or add anything and she said she wasn’t aware of the risk mgmt meetings allegations about herself by DCC until she heard it yesterday. (This is normal process IME as they immediately didn't find any concerns they didn’t need to contact her)



Coroner questions Sarah on the fluctuating symptoms of ME - is one of the manifestations of ME that you can do something one minute and not the next?

 

I’m crashing, there’s a lot of quotes and q&a with Sarah in ME Advocates Ireland’s tweets
I’m going to just write them into note form rather than screen shot, as Sarah’s evidence is of course so important, there’s important details in there.

 

I believe these are quotes from Sarah’s statement. Not necessarily in any order.

Maeve “died at home… In the company of those she loved“

“Maeve is likely to have died from malnutrition as a result of having severe ME”

“It seemed to me that RD & E… It did not take expert specialist advice”

“Maeve could not achieve the level of rest she needed without a high level of support“

“We became socially isolated“

“Maeve knew the NHS did not know how to treat severe ME but she trusted they could treat malnutrition (gist)”

“Maeve was admitted to local hospital three times in 2021”

“As a family we employed Dr W Weir and Helen Baxter to describe to medics at RD and E how malnutrition is treated elsewhere”

“At home it was impossible to get enough calories into Maeve from a liquid diet”

“ Maeve became weaker and weaker, double incontinent, pain when turned“

“ Maeve’s GP Dr Shenton did everything she could to help“

“We all relied on RD&E to instigate treatment“

“Maeve said she did not want to die in hospital if she had to die from starvation she wanted it to be in the familiarity of Home“

“RD&E overlooked the severity of her physical presentation”

“It was as if the hospital didn’t know they had a role in Maeve’s care”

“She had full mental capacity”

“She was starving hungry“

“She was sent home without adequate treatment to die”

 

Apologies if this has been posted before. I haven't been following this thread.

https://www.meresearch.org.uk/how-c...by-oneill-unfolds-in-quotes-with-media-links/

News
How Coroner’s Inquiry into death of Maeve Boothby-O’Neill unfolds – in quotes with media links – Week 1
24 July 2024


The inquest into the events surrounding the death of Maeve Boothby-O’Neill on October 3, 2021 is presently being held at Exeter Coroner’s Court, County Hall, Exeter (from 22 July to 2 August 2024). In summary and to capture the essence of issues regarding the ‘care’ given to those with severe ME and to Maeve in particular, ME Research UK selects quotes from each day’s proceedings and provides links to newspaper and media reports.

https://www.meresearch.org.uk/how-c...ll-unfolds-in-quotes-with-media-links-week-2/

How Coroner’s Inquiry into death of Maeve Boothby-O’Neill unfolds – in quotes with media links – Week 2
31 July 2024
The inquest into the events surrounding the death of Maeve Boothby-O’Neill on October 3, 2021 is presently being held at Exeter Coroner’s Court, County Hall, Exeter (from 22 July to 2 August 2024). In summary and to capture the essence of issues regarding the ‘care’ given to those with severe ME and to Maeve in particular, ME Research UK selects quotes from each day’s proceedings and provides links to newspaper and media reports.