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

From my notes (may not be word for word as quickly handwritten; any errors are, of course, mine):

Spoiler

SoN Q to P: "On this issue that's been raised about Munchausen's - I've done a word search in the DCC bundle; there are 9 references to Munchausen's, 32 mentions of FDIA, and 81 mentions of coercive control. I think this theme runs through like -"

[coroner interjects re the terms & not seeing ref to Mch before admission]

"- did that colour the attitude of social services towards this case, and did you put suspicion before compassion?"

 

I was surprised at the first mention the ohter day of the 45-degree angle. My understanding was that 30-degree was the NHS standard.

 

Health and wellbeing boards are not Integrated Care Boards, Health and wellbeing boards are usually aligned to a local authority whereas an integrated care board can cover multiple local authority areas


Eta: example of a health and wellbeing board description - Swindon, which is part of BSW ICS (clarification - I mean that Swindon is part of the ICS)

Eta: they usually have ICB CEO and sub-ICB area leads on the board, and in addition to lots of duties listed under 'partnership working', they:

 

Thanks for the great write-up! In the case of his thoughts about possible sectioning, he did emphasize that from his perspective he was essentially brainstorming--trying to think of any possible way to get her fed. I think it's important to point out that he seems to have been the only one so far that I can remember who was predicting at the time a "tragic" end if nothing was done. He clearly saw that she was going to die unless they could figure out a way to feed her. To me, those suggestions sounded like good-faith efforts to explore or at least raise every possible avenue. He made clear she had capacity and so I took his mention of possible sectioning in that context--I did not have the sense he thought she really needed to be sectioned for psychological reasons.

 

Thanks! Agree that he was brainstorming there and that he was correct in fearing a "tragic outcome", but there were a few things he said that did concern me a bit: the dismissal of special or restrictive intake as pseudoscience and the comment that people may "feel" that certain foods are not tolerated (a lot of diets are definitely pseudoscientific but in cases like this I think most pwME just try to find what they can practically tolerate best); the unproven association with IBS, and most of all the over-medicalisation comment. He also didn't explain why he thought she would need such a long stay in an inpatient unit.

I noticed names of various members of the press on the Teams call so hopefully the coverage in the mainstream media will continue. Your Virology Blog piece was brilliant, by the way.

 

Thanks, I can’t keep up with the various permutations! Suffice to say there are boards where Council and NHS work together.

 

Yes that would be the gist of it! They have different money, different focuses and different approaches, but lots of cross pollination in all of those domains.

 

No, I don’t think 30 is the standard on the NHS everywhere, at least not in practice, as I was definitely told to sit up for 45 degrees, both during the feed and for 1-2 hours after.

I did a quick google and found a lot of other NHS trusts also mentioning 45 degrees, eg on this page under “my feeding regimen”, it says to maintain 45 degrees. https://www.clatterbridgecc.nhs.uk/...information/being-discharged-nasogastric-tube

Some other NHS trusts mention 30-45 degrees.

 

I thought I saw it mentioned that Maeve was vegetarian? Also she wasn’t happy about being given “animal fats” (possibly milk) did you get any sense of that?

personally I’m veggie and milk can give me really bad IBS so I sympathise with Maeve, these can look like disordered eating to those who are over-attentive to such things. Being a woman and veg/vegan still seems to get peoples backs up for some reason, it’s shorthand for - difficult, bossy, fussy, attention-seeking.

 

Todays Telegraph article

https://archive.ph/OGmd7

 

Telegraph journalist Patrick Sawyer has done a pretty good job here:

'ME, also known as chronic fatigue syndrome, is a debilitating disease that affects the nervous and immune systems and energy production, making it difficult to perform physical and mental tasks and causing severe pain and fatigue.'

.

 

Yes, maybe he could do some training on it for the NHS. He’s probably not heard of it before last week and he can better articulate it than a Consultant at a Coroner’s Inquiry.

 

W.r.t. @Nightsong the question about why the treating consultant didn't get her on to his ward.

I worked in the NHS in the 90's as a locum SHO in medicine and surgery. It was considerably busier than NZ. Likely to be even more busier now.

But much the same, I think, is the Bed Management Team, then and now. These are usually made up of senior nurses who have to decide placement. All patients needing a bed goes via them. They are in touch with the charge nurses of each ward who can supply (after ward rounds) the planned discharges for the day, freeing up beds for admission from A&E and other sources eg planned admissions for procedures etc. As well as transfer's of the consultant's patients back to his/her ward after they have become "medical outliers" (i.e. admitted to other medical wards).

The admitting consultant has virtually no power where his/her patient is going to be admitted to if his/her ward is full. However, I find it very strange they admitted a medical patient to a ward which I would consider a psychiatric ward delivering medical care. Eating Disorders is a subspecialty of Psychiatry. But who knows? might be different in the UK. Our Eating Disorder beds are often not in a busy district hospital, like this hospital, and are overseen by a psychiatrist with advanced, specialised training in Eating Disorders.

My only thought of why they admitted Maeve there was the nursing staff would have a lot of experience in placing NG tubes (which they do in NZ) and with weighing patients and varying dietary needs. (though clearly, they failed in their care of her on many occassions and no clear explanation given...). Why wasn't her consultant/registrar insisting on proper weighing and recording caloric and fluid intake, which was the reason for her admission! So I consider that another omission. Or maybe they tried and the nurses just decided not to, perhaps too hard?...Even with access problems, all things can be negotiated. Seems she was left with her mother in her room and neglected.

I know councils deliver care in the community in the UK. It is my understanding (and please correct me if I am wrong) that when discharge from the ward is being considered a referral has to be made by the hospital. (Discharge Planning and Referral). This is usually not done by doctors but other team members involved in her care - eg. the ward social worker (?a psychiatric social worker in this case) and the primary nurse or someone from the nursing team. I do wonder if that is why the content of this referral information to the DCC is full of reference to FII, Munchausens by Proxy, coercive behaviour etc. It seems one hell of a lot of speculative material and highly inflammatory. Perhaps the referrer was writing down what they think was happening from scraps of reported "behaviour" observed, OR peppered through the nursing and medical notes and they have summarised this material.

I have read here, of the evidence given in the hearing, that senior nursing staff thought M had a psychiatric disorder or suspected one. I have seen nurses start to try and put together diagnoses like this when I did CL psychiatry. M and her mother were in a quiet dark private room, they probably couldn't speak to M because of her ME and her mother was the main source of information. It probably is not something they experience often on a busy eating disorder ward, full mostly of young people, who are often quite social and it can be quite a lively environment sometimes. Nurses start talking with each other to try to gain an understanding of interactions with the mother and M. At handover time, the charge/senior nurse will enter into discussions and see if he/she can answer questions about any of the nursing staff's concerns. It is then up to the charge nurse to discuss any concerns with the registrar/consultant they are under. Sometimes this leads to a referral to CL or to a medical social worker if there are major concerns.

It is unclear what was really going on in the MDT's, they are not sharing the workings of them. I would presume that would only come out in an internal hospital enquiry. It does appear the treating physician did test M's capacity on several occasions as this was mentioned in the testimony and may have been at odds with the nursing team and their "FII opinions". There is certainly no record of CL psychiatry being called in to make an assessment.

 

I hope it isn't too obscure to use this example but if people have a pet that turns its nose up at a particular food, or starts getting problems like diarrhea or increased wind then at no point do most people think its more than 'the food not agreeing with them' and 'maybe a health/illness thing' - but actually 'both' in that circumstance.

Instead of looking at literature as to whether 1000 eg cats with (or without) the same thing (which I doubt is possible as the comorbidities etc are different) to 'cite' most can deal with x so that cat reacting like that 'is wrong' or used as an inference towards said cat and 'maybe they are being fussy', manipulating, or 'its in their head' you just find something. And take clues from perhaps others who've had the closest issues.

You might take health information for tips as to what to try and make sure is included in it (if it was kidney issue or needed B12 due to age) or clues as to what sometimes irritates certain things. But at the end of the day that wouldn't supercede the owners' feedback on what had been tried and the outcomes from it etc.

Then you imagine certain 'orthodoxies' or individuals' beliefs about certain demographics or behaviours being indicative of x (without any proof, and probably outcomes blame the patient for those it doesn't work for etc so huge confirmation bias) in certain human professions. Who genuinely believe they are adding help, but

 

Choosing to be vegetarian is seen as wanting to be different and special, believe me. Having anything “disagreeing” with you on top of choosing to exclude meat and fish is just asking to be judged.

 

I don’t think so. Dr Strain tried to manage things, Dr Weir gave advice. Literally everyone involved in her care seemingly has zero knowledge of what S/VS ME actually does to you, does to your symptoms. At every turn there was a “default” to “normal practice” and consternation that Maeve wouldn’t respond as expected.

 

Will try and respond to this very thoughtful comment more thoroughly tomorrow, but just a few brief points - I do remember bed-management teams myself but in this case M was promised a bed on what was considered a much more suitable ward & this had been agreed in advance. Bed management teams are necessary but should have been considerate of such rare circumstances as Ms. Also from the various descriptions Lowman wasn't strictly psych - I know media coverage & some Tweets said "eating disorder ward" but according to testimony both Bowman & Lowman were acute medical wards - Lowman's focus was diabetes & endo but was also the ward where pts on an ED pathway were placed - it seemed unusual to me but that was the testimony - wasn't well described by the witnesses but obviously the coercivity & relative lack of personal autonomy that prevails in ED settings would be very distressing if applied to someone with severe ME and who desperately wanted to eat but couldn't, as would the more social environment that prevails among ED patients so I can understand why M would have objected to such a placement.

M didn't spend all her time in a side room in the admission being discussed in my last post - requested but they were only able to find a quieter place on a bay, which must again have been very difficult for her. Various questions re DOLS scattered throughout the referenced notes but never came to anything - from testimony she was obviously consistently considered capacitous. I suspect a lot of the MbSP stuff came from the social workers themselves not understanding the sensory sensitivities & the severity & low-threshold PEM of very severe ME and misinterpreting being denied access to M at times, places & by methods of their choosing (which included extemporaneous in-person visits on at least one occasion) - but we will undoubtedly hear a lot more about that tomorrow.

Liaison psych did try to visit once while M inpatient (not sure if I wrote those notes up - it was discussed in Warren's testimony after the Teams disconnection/reconnection).

 

I actually thought 45 degrees was the typical standard and was puzzled at the talk of 30 degrees!

BTW I wasn't well enough to listen in on the day of Strain's testimony but from a question today it was mentioned that Strain had said that more recently the RD&E have been trialling enteral feeding at a 10 degree elevation (I think - from memory, without my notes - that quotation came from Sean's question to Blackburn near the end of his testimony). Not sure what Strain actually said specifically about that - hopefully they'll talk about it further if there's a wider discussion of feeding policies, or maybe when Hemsley testifies.

 

Thank you again @Nightsong for your sterling efforts in capturing as much of the inquest as you have. Very grateful.

 

Well we all call them towns too. We just can’t write it without much fuss ensuing.