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

The There for ME letter is very good. Very impressed by them generally. Shepherd's isn't bad either.

Both more measured, better argued and less angry than mine. But both lacking the perspective that Miller et al's attitudes towards patients cause harm.

 

I also just want to flag up that I haven't seen any outlets report on Sean O Neill's calling out of SW by name. This is not surprising, as I suppose they don't want to get sued/come under intense pressure over it. They have reported what S O'N wrote about the wider culture which is good. And we are all very used to the culture of silence around ME and BPS crimes.

But it is news, and in the public interest. One of the most powerful physicians in the country was just accused by a fairly prominent journalist of being instrumental in creating the culture of denial and abuse that lead to the death of his daughter. In court no less.

My understanding is that it wouldn't be slander to repeat his words. But perhaps I'm wrong.

 

From memory, I tried to argue that we know it’s not psychological because we have all this evidence of physiological abnormalities. Now, I would emphasise how little we know about the pathology. I would use the NICE guideline, the re-analysis of PACE and other studies to show that CBT/GET don’t work and cause harm. And I would highlight the systemic injustices which have been caused by the adoption of the unscientific BPS model of ME/CFS.

I have written to and spoken to my new MP. She’s new to me because of constituency boundary changes but not a new MP. I asked her to join the new APPG, and to ask the Health Secretary to ring-fence appropriate funding for ME/CFS research. On the phone we also discussed the NICE gl, the inadequacy of services and the inquest, which she was aware of through the media.

She told me she would join the APPG and speak to Sajid Javid, who she knows well. She also suggested applying for another Westminster Hall or backbench business debate. She is now in opposition having previously been in government, which means she has more time and opportunity to get involved with this type of thing.

She said she would report back to me after speaking to Javid and AfME (who have secretarial duties for the APPG) to discuss what more she can do. I also want to ensure that she gets the arguments right if she submits any questions etc.

I was heartened by her apparent sympathy and enthusiasm to help. And I’m sure that the media coverage of the inquest has helped with that.

 

Does anyone have an archived Guardian article link I accidentally clicked on their horrid article and I really resent having given them that for that one.

Whilst I was there already I thought I might as well read the comments but I couldn’t find them, is there somewhere else that they might be captured together?

 

Here’s my twitter notes from Friday. Thanks to ME Advocates Ireland.
Statement read by Kate Jenkins nurse and clinical matron RD&E

She will be speaking to the statement of Ms S Hughes
KJ has no personal knowledge of Maeve or Sarah. She is responsible for patient safety and can influence training and look at gaps in training. KJ confirms that SH had no training in ME, but that a nurse would look at the NICE guidelines for information, seek guidance from Drs. She can see that the Neuro, dietician and CFS service were involved according to the notes she saw.

KJ reads from the notes which outline nursing care of Maeve- a review for equipment, meeting Sarah, Maeve in a darkened room asleep, that she could roll, skin was assessed for pressure damage, UCR is the urgent community response team- was referred to UCR who contacted Sarah and equipment was a provided. KJ explains the assessment of Maeve followed. They checked the baseline observations. KJ assumes they did a safe assessment because equipment was provided.

Coronet reads notes “community service is not in emergency service” KJ explains more about that, one of the things she said was that patients are referred to the matron for long-term condition review.

KJ reads from statement which refers to milk intolerance and request for alternative; request for catheter and other items mentioned. “ Maeve finds it exhausting to mobilise” catheter was inserted so Maeve and Sarah had a good night rest at home. It was a visit to check the catheter. KJ read statement which refers to a visit on 18th May 21 which refers to the removal of the catheter and other checks and request for a particular mattress by Sarah. KJ reads another part of the statement Maeve discharged from hospital, NG tube not necessary Referred on discharge to UCR, there was a discussion about checking chewing. KJ doesn’t recall who talked about the chewing.

KJ reads from statement mention of a request for two weeks between visits so Maeve would be able to manage visits better following her feeling exhausted after the community nurse visits Package of care by UCR following discharge provides a “bridge of care” UCR help in the acute period between hospital discharge and when other services kick in. They have nurses and therapists, community nursing care is longer term. KJ reads from statement focus on skin assessment and pressure areas September 24 plan for a review of pressure areas due to nutritional issues, images of pressure damage were provided.

Sarah starts questioning KJ and thanks her for representing someone else (SH) in court today.

Sarah asks what would it look like for someone, visiting Maeve? Sarah reads SH notes “this is so far out of there [community nurses] comfort zone” Sarah asked - not having visited or seeing Maeve, how would risk be assessed?

KJ says they would have been concerned about the risk of pressure sores; we would give advice to the caregiver to find a compromise re-what could be done to help, but wouldn’t consider that person a risk

KJ read notes regarding phone call where Sarah is upset and angry, “aggressive and angry” feel she’s not being listened to and that her daughter will die; that Maeve isn’t eating, needs a bed pan. There would be a package of care arranged. Sarah stated she couldn’t afford the resources needed,.

Sarah asked what it means that a mattress is in situ. KJ says that it’s in place provided. (It seems it was the wrong size).

Sarah asks if UCR visits for how long are they involved? KJ replies they would be involved for seven days, not always the timescale as they would stay on if necessary. They would do a referral to community[nursing] electronically.

Sarah asks, on 14 May 21 contact when she rang several times begging community nurses for help with double incontinence issues why was there no help? KJ says she can’t answer as she doesn’t know.

Sarah said she called by phone every day and the calls were not answered. If a carer calls nursing team for help you’d give advice and not automatically assume there was a risk. Sarah says for the sake of clarity when a district nurse on home visits don’t know what they will meet… They will meet a person in awful state who feels embarrassed by their presentation… They can blink and try to communicate rapid eye movement (Twitter says Sarah is sounding very emotional and upset. She’s trying to ask a question of someone who wasn’t even there) the coroner stops the reply.

Sarah asked why nutrition hydration and medication is not in SH’s notes KJ cannot respond. Sarah asks regarding risk assessing in the community. Which is the greater risk? not taking med not having nutrition or hydration or a pressure sore? KJ says Equally high risk.

The hospital trust rep is now asking questions of KJ. Are you able to say how many visits were possible for me during the period? KJ States Initial visit, catheter visit, overnight regarding catheter done, remove the catheter, potentially eight visits.

Trust rep refers to a gap in visits(conversation briefly in questions regarding community nurse visits can’t catch rapid speech) KJ finished.

Coroner reads from statements of Dr Lucy Shenton.

From April 2021 there was only one consultant that expressed that ME was a medical condition. Dr Roy understood that this was a complex case. “This is so far out of their comprehension it takes time for the pennies to drop that this is ME“ the longer the admission the more detrimental the impact on her, LS “I wanted them to take ownership of Maeve’s case“.

Maeve stopped eating on 8 August 21. She was potentially a candidate for every medical support but I was unsure of the plan. Her ME was difficult to manage and beyond my expertise (gist).

LS I didn’t doubt her capacity but wanted advice. Decisions were Maeve’s decisions without coercion. The decision to admit Maeve to RD&E on 19 May 2021 was precipitated by safeguarding. Her ME symptoms limited her nutritional intake, and intake exacerbated symptoms (gist) regarding severe ME there needs to be more funding that needs to be specialist care and away for the patient to access that provision clear systems ought to be in place (gist).

Maeve knew that since her formal diagnosis in 2012 she had deteriorated. Professor Adrian Harris email referred to. Coroner is looking at emails from doctors to the RD&E hospital. And referring to extracts of letters regarding Maeve, Maeve’s care and hospital admission.

Coroner has read and assimilated everyone submissions she will now read about fludrocortisone from Dr Warren. It was prescribed across the last two admissions given every day for periods of time discontinued 23rd June 21.

Coroner states an example of where article 2[EHRC right to life] is relevant.It doesn’t extend into a situation outside of state confinement. Coroner says if she did engage in article 2 she would be use more judgemental language. Coroner refers to neglect about whether there was a bad exercise of judgement by a doctor; can’t be seen as neglect in the legal sense. Can’t look at regulation 27 (28? Prevention on future deaths report) evidence until 27 September Mr Hemsley should come in on that date.

 

It is a pretty disturbing thought that potentially the BPS and some of those in the inquest might be hoping the solution proposed would be to provide more funding to something like this - I felt like it was being pushed a lot around the time the new guideline was released, from memory. EDIT: I'm now realising the significance of that date-wise in relation to Maeve

Nothing I have heard about it since when I've dug into it gives me confidence that it is a safe place even if it were sensible to ship people who were so ill they couldn't travel to such a place instead of treating their urgent non-ME needs in a way that includes appropriate adjustments (eg noise, light, not trying to exercise them etc).

I can see the attraction however for those who are non-ME specialists in a hospital of being told 'there is somewhere you can send them to be dealt with' instead of retraining taking place. It's a bit ghettoisation-ey when you think of it that way, and I don't think it fixes the real issue list (which is very long indeed) or what happens if someone has an emergency who happens to have ME etc.

My big worry is that somewhere branded a certain way has been using a selective sample to then provide claims of outcomes that (even if they weren't problematic due to common issues of bias, coercion, other methodological issues etc) are not externally valid to the rest of the ME/CFS population - but do/will outsiders get that?

 

The published letters to the Editor are good in so far as they address some of the missing information that should have been included by Dr Miller in his ‘Opinion’ piece. However, for me they do not cover the central issue, which is that in not giving full information on all the medical views around ME/CFS and the quality (or lack of quality) in the evidence base supporting them his public comments were legally and ethically unjustifiable.

Dr Miller is not the arbiter between the merits of competing or differing medical views. In the final and only relevant analysis, it is the (competent) patient who decides which medical view and treatment is right for them. The law (Montgomery and other Judgements) together with Professional Medical Ethics Guidance issued by the GMC, make it quite clear that Medical Professionals have a ‘Duty of Care’ towards patients (and members of the public).

This ‘Duty of Care’ requires that when explaining medical matters, they must give a full explanation of all the evidenced Medical views and treatment options together with information on all the risk’s associated with each treatment recommendation. Failure to do so is misleading and could be construed as an attempt to influence patient/public choice of medical view/treatment.

Creating or supporting a false medical controversy red herring is not the way to practice medicine and is detrimental to patients and the Medical Profession. Fully ‘informed consent’ is there to protect both the patient and the practitioner in just these circumstances.

We should not have to rely on letters to the Editor or comments below the article to correct for missing information or to remind that the patients fully ‘Informed Consent ‘ is the only basis on which any treatment can be administered except in very exceptional situations.

I wrote to the Observer in just these terms and did not expect to be published. However, some years ago we wrote to the Guardian in similar terms about another medical opinion piece on ME/CFS by another Doctor who wrote regularly for them. We were not published then, but he was not used again by the Guardian. I hope that the Observer will be more careful in future in ensuring that HCP’s fully fulfil their responsibilities to patients and the public when commenting on medical explanations and treatments regarding ME/CFS.

The unpublished letters will have influenced the choice and content of those published, so are not wasted effort. Thanks to all who wrote.

 

my bold - going to write this out and put it in my wallet in case of hospital admission. This is why, whenever you get something minor done like looking at removing a mole, they warn of a 30% chance of X happening etc. All other specialisms seem to do this as a matter of course, it seems overly fussy for minor issues with minor chances of some small inconvenience happening. But we should be getting that level of attention for ME and “management strategies” vs non-management etc.

 

This is very true, I’ve had experience of the Guardian saying nothing supportive, but silently changing editorial direction. They’re very risk averse due to low staffing and tight margins.

 

Yes, if I had been told that my doctor was telling me the mind and body are connected because he believes that ME is a conversation disorder, and that so many patients had said that GET harmed them that NICE was reviewing their guidelines, then you couldn't have paid me to start Couch to 5k or any other form of GET.

He even told me 'you don't want this diagnoses', but didn't tell me why (medical stigma). That is a massive failure of informed consent.

He did so much more harm than the arseholes who were like 'it's just depression, take antidepressants', because they could be dismissed. That is what I was trying to get across about Miller's rhetoric in my letter. It harms because it is dishonest, obfuscating and attempts to fraudulently earn the patient/reader's trust.

 

I’m wondering why TPN was offered late September. We heard how it wouldn’t be safe, would cause sepsis which would be fatal, earlier on. Was it offered because she was on end of life care, and so at that stage the “risk” of it killing her was balanced against her being in the process of dying? Surely not.
I’d loved to have seen the paperwork for that decision.

 

The timeline and unusual points have started to percolate? In my brain and produce idea coffee.

Dr Roy stated that TPN in the community was happening, that was a key part of what his team oversees. But the patients either have otherwise good health and ability to manage themselves, or there’s a high nursing burden, hygiene, blood sugar tests, trained family& carers.

So if it’s the case that the barrier to Maeve having TPN at home was the nursing burden, hygiene, carers, training, that is easily resolved as that is obviously managed for other people in the community.

Maeve made the decision to go home due to the hospital environment exacerbating her ME, and lack of treatment.
If they offered TPN during any hospital admission, they would have the nursing burden and sterile environment all taken care of. All they needed to do is find her a quiet dark single side room.

I really don’t see how it can be that they refused to treat Maeve with TPN because, at the end, they offered TPN.

The delay in offering TPN was in part caused by Dr Roy following the “usual” checks with SALT etc
Dr Weir suggested NJ is done now -before Maeve loses her ability to swallow (May or June?) I’m 50/50 on this, Dr Roy had good advice but followed the “protocol” and there’s no ME protocol, so how could he have done anything else. That’s a weaker point.

Overall, it should have been possible to provide Maeve with treatment which could have prolonged her life. It’s harder to say it would save her life as there’s no evidence base? Maybe?
She didn’t die from ME, but from malnutrition and dehydration.

 

Interesting, the GP said one Consultant didn't think ME was a medical problem. Now we have the Matron of the hospital saying the same. So who is this Consultant? and what role did they play in her care? Has he or she given evidence? Why aren't they naming this consultant?

I can see the influence of a lot of medical defence lawyers telling their clients what they should and shouldn't say. It only takes one little thing and they could all be in big hot water.

Interesting, the GP has backtracked on her past statements saying it was the worst treatment she ever saw of a patient, to the alternative -she could not recall having done so and if she did, it was wrong to say. Has the trust wanted this statement removed because it is was so incendiary?

On the information provided here, thanks, I did think the Matron's evidence was lacking, or no one asked her, about the nursing staff's belief about ME being a medical or a psychological/psychiatric problem. Where was information on her caloric intake not being done as well as her weight. There seems to be an assumption that the core treating team on the ward is doctors, when in fact, nursing staff deliver the care and it is often their report of "out of normal" behaviour that can have an influence within the MDT. I guess we will never know.

There would have been a lot of nursing care needed at home for the TPN. I am not sure how often they would give it (my recall from quite a few decades ago, it was given over several hours, once a day). The district nurse would probably have to be there for the entire time to monitor the infusion and also go and collect it from the hospital's TPN dietician.

It is a bit confusing the timeline. Dr Roy got her swallow formally checked, I am not sure she ever got a NJ and he then thought she needed to be sectioned for TPN.

 

Dr Roy said he’d never seen someone get it unless they were sectioned. Therefore the way he’s seen it is the right way and anything else is pooh-poohed.
Presumably, someone gets sectioned and forced to have NG - even if it involves them being forced? Which would involve a high nursing burden. Especially as it would make Maeve more ill.

I’m not sure if you’re conflating the hospital nurses with community ones?

 

I find that hard to believe, if that is what he said. He is a gastroenterologist, he would have seen lots of patients over his career getting TPN. It is common on surgical wards when people eg. people's with Chrohn's Disease (and many other gastrointestinal diseases), who are unable to absorb nutrients in their GI tract go on TPN.

I think there may be some information missing and perhaps he thought the only way to get her to have nutrient support via TPN was to section her. Yes, a lot of nursing support would be required and would have taken away the last of her autonomy and be very traumatic.

No, I am just curious that they weren't asking the nursing staff about their attitudes towards ME. I know they said they had never nursed a ME patient but I wonder where Dr Strain's concerns in the letter to the Trust CEO, about all the staff who didn't believe ME was a medical problem but apparently this was not the doctors as they all testified they did.

 

I think he either said or implied that either you have a non-functioning gut (the Crohn's situation) or you need sectioning (maybe anorexia nervosa). That may cover 95% of cases. I think it is possible that this gastroenterologist had no experience with people with neither. But I also suspect that this talk is coloured by recent papers from the nutrition people trying to argue that 'functional' cases should not be given artificial nutritional support if possible. The papers do not say never but they are quite confused in places and might seem to justify turning patients away.

 

It seems that the fundamental issue is how to handle patients who don't clearly fall into either the "disease proven by objective test" or "psychological problem" categories.

It seems that there is a strong current in medicine that wants to manage these patients as if they fall into the "psychological problem" category, and there is demand for evidence and narratives to justify this desire. The evidence and narratives never seem to hold up to closer scrutiny.

The BPS approach consists of presenting a dishonest narrative to patients and society that serves only to avoid/reduce resistance to the subsequent management of patients in a way that is more or less identical to that given to patients with entirely psychological problems.The patients were never intended to be the primary beneficiaries of this approach. It exists for the convenience and benefit of the healthcare/insurance/benefits system.

The right course of action is to admit that we need to develop the right way of managing these patients. In the meantime patients need legal protection against what is being done to them.