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

Questions from Maeve's parents to Dr W. First question: that the risks of feeding Maeve were considered but that the risks of not feeding her were not considered? A very powerful point. Second question is that if there had been such intervention, if her life could have been saved: another very powerful point. Dr Weir agrees that it could. 3rd Q is how common malnutrition is in severe ME? Dr W says it is very common, and segues back into a discussion of MCAS and his theory that mast cell activation makes intestinal epithelia unable to absorb the appropriate foodstuffs; he also mentions that weakness makes it difficult for severe pwME to swallow food.

Dr Weir mentions that the uptake of the e-learning module has been poor and discusses the importance of improving medical education regarding the fact that ME can cause nutritional problems; he states that the biggest obstacle is the dogma that ME is psychological and that until the dogma is properly buried & replaced with a "scientific understanding of this condition" then we are not going to be able to understand & treat it properly.

The 4th question was how prevalent is that psychological dogma - that while it is changing with the NICE guideline etc is there professional institutional resistance? Dr W says his only comment in response to that is "there are none so blind as those who cannot see" and that there are many medical professionals who continue to adhere to that dogma. He is also asked about how rare it is for hospitals to see patients as unwell with ME as Maeve & that lots of those involved in her care had told her they they had never met anyone as unwell as her, whereas Dr W has had the advantage of seeing a number of seriously ill patients; Dr W replied by discussing his days at the Royal Free and mentioned that the advent of modern communications methods means that there is far greater awareness of what had previously been a hidden problem.

Another question about different types of tubes; Dr Weir states that gastroparesis is a common problem in severe pwME and explains his view of the progression of options (NG, NJ, PEG-G/J) that might be needed and that in his experience some pwME do end up requiring PEG-G/Js.

Dr W mentions how home care, with its lower levels of stimulus etc are best. Asked if he knew of cases where people had recovered, he said that he had not seen many people who had been so very ill who had recovered but that when patients' "physiological abnormalities are attended to" - mentioning IV saline & nutrition - some do improve.

The RD&E lawyer (?) is going to question Dr W next so I will conclude this post here.
 
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After listening to Dr Strain and Dr Weir, I'm wondering about the chronic fatigue services that are headed up by a psychiatrist. This inquest has made it abundantly clear that the illness is biological yet when Dr Bansal retired, he was replaced by a psychiatrist. There is a thread on here which covers this.

This is probably the case right round the country. What to do? I'm probably jumping the gun because a lot should come from the inquest but I feel so angry at the uselessness of what has been going on.
 
Binkie4 said:
After listening to Dr Strain and Dr Weir, I'm wondering about the chronic fatigue services that are headed up by a psychiatrist. This inquest has made it abundantly clear that the illness is biological yet when Dr Bansal retired, he was replaced by a psychiatrist. There is a thread on here which covers this.

This is probably the case right round the country. What to do? I'm probably jumping the gun because a lot should come from the inquest but I feel so angry at the uselessness of what has been going on.
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And a psychiatrist replaced Esther Crawley ...
 
Binkie4 said:
The coroner stopped proceedings for a 10 minute break ( Dr Weir had been answering questions for an hour and a half by then - more to come) but I along with others cannot get back in.
They will probably allow reentries after lunch but there is no fixed time for this.

edit: it is being said on fb that reopening time after lunch is 1.50. No idea if this is the case.
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I am still connected so if they say any different I will let you know
 
RD&E trust questioner opens by asking Dr Weir about his expertise and background. Dr W discusses his time in the NHS at the Royal Free, seeing patients with infections where the majority would recover but that, interestingly, a small minority would not and would develop ME/CFS. Most cases that he saw were mild and able to attend outpatient appointments, but Dr W thinks that there were a number of more severe cases that were hidden; he points out that modern communications have resulted in greater awareness and understanding of this. He asks about his specific consultant-level experience; it was in infectious & tropical disease.

He asks if Dr W had access to medical and nursing records - no - communications were mainly with her father, Dr Strain, and a Dr Prague (sp?) from RD&E. To give a flavour of the questioning at this point: "would you accept that it was somewhat from afar?" "one step removed?" "you never saw her in hospital, did you?".

There was a discussion regarding her second admission and a conversation between Dr W and Prague (sp?) on 25 May. Was Dr W aware, he asked, that during that admission the MDT was satisfied that Maeve was receiving adequate nutrition of 14-1700 kcal/d? Weir replies that while her fluid intake was adequate at the time many such patients have low blood volume and indicates that his impression was that "additional nutrition would have been required for Maeve in that situation", also pointing out that it would have been more appropriate not just to assess whether she could swallow sporadically but continuously, i.e. to eat a full meal.

He returned to the point that the contemporaneous assessment had said that there was adequate nutrition for discharge, and pointed out that neither Dr W nor Strain are gastroenterologists or dieticians and asked if Dr W would defer to their expertise. Weir replies such expertise applies to more common conditions where NG/NJ feeding is in prospect but that Maeve's situation was "very different and very unique" and that, as it is so uncommon and that many of those seeing her would not have encountered this condition before, many aspects of a standard risk-benefit analysis would not have applied to this situation.

He returned once again to his point about this assessment showing adequate nutrition at the time. Dr W replies that as Maeve's condition had deteriorated that he would "have to consider the quality of the decision making". The coroner asks Dr W if he would consider an NG/NJ even if someone was still eating food; Dr W replies that some pwME are so weak that they can swallow a few mouthfuls but are unable to eat a full meal & gives his theory that problems with mast cells affecting lining of the gut will affect the rate at which food items can be absorbed.

The questioner asks that even if nutrition was established by other means, is Dr W saying that he would proceed with NG/NJ? Dr W replies that by July her nutritional status was such that that was necessary & should have been instituted in May. He asks whether that is not contrary to the RCP guidance; Dr W answers that the RCP guidance doesn't actually involve or include an understanding of the very unique place of this illness. He asks about the understood and known risks such as aspiration pneumonia: Dr W reiterates his view that much of that evidence comes from stroke patients with an impaired cough reflex. Dr W apparently told Prague (sp?) that with blood volume expansion Maeve may be able to sit up.

He then asks if the risk/benefit calculus could not have changed between May (when the RD&E assessed her as having adequate nutrition) and July; Dr W replies that he understands there were no aspiration difficulties when the tube was placed in July. He then queries the extent of Dr W's understanding given his lack of access to medical records and asks if Maeve's vomiting during NG feeding would not have presented a higher aspiration risk. Dr W agrees that vomiting increases the risk but suggests the correct approach would have been to substitute an NJ tube, and thinks the outcomes would have been better had one been placed in April.

He moves on to Dr W's September proposal that TPN should be instituted, and enquires whether Dr W knew Maeve's views regarding the suitability of further such treatment; he did not. There is a discussion of hypersensitivity to being touched & washed. Dr W remarks that this is often misinterpreted as a psychological disorder but in Maeve's case was due to her ME. Dr W makes a comparison to meningitis, where he says patients hate being turned over and prefer to be in darkened rooms.

He queries Dr W on the risks of sepsis, especially in a non-sterile environment. Dr W replies that there needed to be a risk-benefit assessment, going on to describe TPN procedures and sterile precautions. He reminds Dr W that he is not a gastroenterologist, that there were difficulties around touch & personal care & the fact that she didn't want to be in hospital, mentioning that TPN increases the nursing-care need which Maeve struggled with and asks if Dr W was aware that starting TPN requires a prolonged admission to hospital? Dr W replies that part of the whole process of looking after a patient is persuading them of what is necessary and that she could have been admitted into a quiet room with dark curtains and other environmental adaptations. The questioner states that some adaptations were made and recalls Strain's testimony from yesterday that measures in regard to such adaptations have been improved now; Dr W replies that he was not a witness to that from 150 miles away.

The next witness is a social care manager from the council. She explained her duties under the Care Act, reads her statement and there is a a discussion of calls and messages left. She explained that often there was direct contact with someone who will then give another person permission to speak on their behalf; they were concerned about needing to speak directly to Maeve.

The inquest has broken for lunch so I'll continue in a new post.
 
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MrMagoo said:
I’m Jumping back to Dr Weir’s evidence, as I think this is a really key point, he referred to a report in 2002 regarding feeding for pw severe ME, a tweet suggests it’s this one.
https://me-pedia.org/wiki/Chief_Medical_Officer_Report_2002
http://www.erythos.com/gibsonenquiry/docs/cmoreport.pdf
My summary is that Dr weir is saying we knew this in 2002. He also said it’s been recent years where Drs treating pw SVS ME how to feed has become a problem
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Yes, Dr W mentioned his involvement with writing that report and that severe needs re. nutrition were known and included in that report even back then.
 
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I believe Dr Roy is the Gastroenterologist at the hospital and he was against TPN due to risk of sepsis, mentioned briefly yesterday. Assume he will have been called to give evidence to the Inquiry, we don’t know in advance who is appearing so we’ll have to wait to see.
 
A Commenter in one of the nationals, article on the Inquest, Comments on NICE Guidelines for ME asked:

Question: "What’s the cost/benefit breakdown underpinning those guidelines?"

ie NICE for ME/CFS and NICE for
'Nutrition support for adults: oral nutrition support, enteral tube feeding and parenteral nutrition'.


 
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I have lost sound so am grateful for reports from inquest.
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Testimony of the council worker so far (apologies, these notes are quite fragmented yet again, will try to edit for clarity):

~1420 A discussion of the procedures and policies around safeguarding and assessments and what is required.

~1422 Lack of agreement from Maeve to be admitted leads to MH assessment (10 Sep): Query FII - prompts safeguarding review. Coroner, reading the minutes, details how the concerns around FII & self neglect were subsequently considered not valid & dismissed. Witness then describes how things moved on from potential safeguarding issues to concerns about the "risk to life" situation owing to her nutritional needs. Meeting called - Dr Roy on annual leave but Strain attended.

~1428 States that the rationale around not going into hospital related to the energy & effort involved & she preferred to remain at home in this situation. Maeve's preference was to be pain-free & spent time with loved ones; she didn't want to die but understood there was no treatment for her condition. References to Dr Strain's testimony - limited understanding of ME and the NICE guidelines at the time did not address ME as severe as Maeve's. Discussion with Dr Roy/RD&E - advised TPN not usually given in someone with a functioning gut except in the case of someone detained under the MH act.

~1438 A discussion re palliative care measures; GP (Shenton) not comfortable prescribing syringe driver without support from other doctors (I think; audio difficulties). Witness sought support from Anthony Hemsley in engaging with Dr Roy. Consensus that TPN not appropriate & aim for symptom control at home.

~1441 SB asking questions about the lack of visits to the home from DCC, the timing of care arrangements, etc. Witness says that they never got to meet Maeve at home. SB asked how things work when there is an informal, unpaid carer. There was a discussion of "Agincare" (a care service commissioned by DCC) being unable to assist with nutrition lying down because of the "risks". SB asks about Maeve's specific request to be protected from neglect by health & social care services.
 
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Haveyoutriedyoga said:
I don't think the headline is very good, I think it blends the issue in with the general "hospitals are overrun and don't have enough beds" narrative, as if there's nothing unusual about a bed shortage. It also suggests that there are some specialist beds, just not enough, but actually there are none (as far as I understand it).

ME patients face specialist bed shortage - inquest
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Very bad framing, especially so soon after this issue was highlighted during the pandemic: it's not the beds, it's the staff and equipment. You can have as many beds as you want, they need competent staff with adequate resources. Just as guidelines are irrelevant if they're deliberately ignored and so are laws when they are not enforced.

Beds are entirely irrelevant here, there is zero adequate competent care across the board for any level of severity and hospitals are actually used to dealing with stuff like this. The problem is all the way to palliative care, but this is the tip of the iceberg. The staff involved had everything in their hands to do better and not let her die. They made decisions that essentially amount to choosing to letting her die. Not because of any scarcity of equipment, and not even because of a crisis of emergency care in a time of pandemic, as the same issue happened before and is still happening right now. As things stand, the clear message from those responsible is that they will do it again, and that their employer expects it.

There is a lot of waffling about who was in charge and it's very obvious to me that it was all a choice to escape responsibility: if no one is in charge, then no one is responsible. Which is BS, it actually means that everyone is responsible, because this is a long-standing issue that has been resolved a long time ago with the principle of an attending physician. Situations like this are never acceptable, where they sometimes deferred to Strain even though he had little insight and no decision-making power. This is the worst possible situation.

The same thing is happening as we speak, very likely to far more patients than we know of, including in the NHS. And there they also choose to make the same choices, the same lack of responsibility and feigned confusion as to whether they should let someone starve to death because they don't have specific guidance in this specific context.
 
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