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

There are a few issues with this.

Firstly exhaustion is the big factor it seems for many. Which leads to a 'can't' - and things like the ridiculousness of someone taking ability to swallow water from a sponge once as if it meant they 'can eat' both sufficiently to survive (and digest) , but whilst this is harder to word in a way that doesn't sound incredulous, doesn't take up more energy than they have to not go further downhill the next day etc. Of course eventually they've gone downhill so much they are there anyway.

And there are probably things to do with not having enough energy in the body to digest whilst other things are exerting or to do it in one go at the same speed as would be normal when people get that ill. Just like doesn't digestion stop when someone ends up in eg a crisis and the theoretical body needs to divert all resources to getting out of an emergency first.

I'm no medic but from what I've heard it sounds like things just start to fail and get hard to fix without support because there isn't some magic energy coming from somewhere, so the source mightn't (but they aren't looking are they) be specifically in the gut 'structural' (whatever that is limited to) but once someone is that poorly the pathway back is starting to relieve what depends on that same battery and doing what is possible to preserve vital functions without it causing more exertion.

There might also be things to do with the horrible hypersensitivities the illness has and are worse the more severe they are, but also the more over-exerted they are, so if stuck in an environment like a hospital these will already be being antagonised continually which makes everything worse particularly regarding that. Just like someone might get diahorrea and more sensitive to touch etc if they had a migraine and had to sit in a strobe lighted rock concert for 4 days.

I just don't think that the system is capable of the nuances you are trying to describe as a half-way house. It feels like it has been too manipulated over the years with fake terms for people to be able to hear things clearly like they might have a few decades ago, or just see someone was ill and the light was really hurting them (instead of 'seeing' that as 'oh they need to be trained because its a phobia').

It literally has been so strongly sold that it seems like the philosophy cliche of 'when two different people look at the same colour blue do they see the same thing'

They will hear it as what they think 'functional' is. The whole system has designed mental health to cover aspects it was never qualified for. But to blag claiming it can. This would/could just be heard as 'need to up the intensity' or 'change flavour' [or my personal non-favourite: 'personalise'] by people who don't investigate cause and don't change their 'what' they offer and check it works; just tweak the how often and the sales pitch (when CBT doesn't work, 'must have been done wrong').

And there are people who do still force people onto knees that scream with pain and just generally call the person screaming names and a wimp for over-reacting/not putting up with it vs those who see it as part of the diagnostics.

 

is there any proof that it is even the right think for eating disorders treatment given I get the sense that area has a massive issue with disregarding the testimony of patients, and probably aren't doing controlled tests for specific situations (to see if that works or just causes more problems)

I think we've all worked in place where the phrase 'we've done it that way for'
means something totally different to the type of person and answer that can give real reasons for it - or are citing what has worked in certain cases or proper research etc. I mean these aren't even terms citing 'protocol' or anything, is that what is meant, or are they literally answering it with 'this is what we do for .. different patients'.

I remember a previous question to someone else who said he sent a patient for a long stay in Leeds, somewhere in relation to a suggestion he thought she needed a long stay somewhere. and perhaps wasn't expecting to be asked what the outcome of that Leeds stay was. And he said he'd read in the paper the patient had died.

 

OK maybe that sounds like an interesting 'loop' if there is no other pathway that can go under . And seems to correlate with terms like neglect and self-neglect that you see and hear. When to a layperson you wonder if that's the accurate term for the situation.

- a bit like the 'functional' loop apparently being the only one if there is no structural gut issue and ideas like you'd have to be sectioned to get TPN but if you are in a place where they say things like 'don't want to medicalise' and functional stuff then handing over your ability to make decisions for yourself wouldn't necessarily mean they wouldn't instead just put you on a GET course.

It seems particularly strange because it must be incredibly common for elderly or people who have an operation or accident or another condition that gets worse. What does someone with very severe MS have as a pathway? Is it not there because they wouldn't be in this situation in the first place because there is medical care? I've seen social media ads about stroke patients being sent home days after a stroke to fend alone but don't know what the situation is

 

exactly all this. How to get past the people looking at you but not hearing, just looking for the odd word to pin their thoughts on and pretend it applies, I don't know.

 

Was I right in thinking that the only person offering advice (based on his other patients) on how to possibly get Maeve to sit up a little more was Dr Weir?

Listing to the hospital doctors this week there were references to "Maeve will try to sit up 3 times a day' and other nonsense. As if she would be magically able to sit up if she could be badgered into agreeing to do it.

At the same time they placed her in an Eating Disorders ward with all the accompanying noise, light etc and subjected her to all the stress and exertions associated with being in a hospital.

This making it less likely she would have any possibility of being able to recover some strength and actually sit up. That is if it wasn't POTS etc making her too dizzy to do so.

They also failed to make sure she had adequate hydration, meaning that they ignored Dr Weir's advice on low blood volume as being a possible contributing factor or even the basic needs of someone throwing up.

One medic described Maeve as being too exhausted to talk to them with her eyes flickering but even this wasn't enough to get her moved somewhere quiet and safe.

Then after making her physical functioning worse they talk about treating "Maeve rather than the ME" but never acknowledging it is their hospital and their treatment of her that is making everything much worse and doing something about it.

The ME complications became a way of taking the blame off them.

 

I know nothing about this area but just clicked through on that link and read the following:

To me this says that intestinal failure is defined by a reduction in gut function....


So all this stuff about 'structural' vs 'functional' we've been hearing ....

Do even the list of Type I-III even touch on 'it must be caused only by these things'?

 

It certainly seems as if there was no coherent plan, based on experience with ME/CFS patients, within the hospital. But it is not clear that Dr Weir's advice was well founded. The evidence for low blood volume is uncertain. There is no reliable evidence for benefit from IV saline, which, in general terms, has no effect on blood volume over more than an hour or so.

I worry that the motivation for 'avoiding medicalisation' is to a significant extent driven by a reaction to a perception of ungrounded 'medicalisation' in terms of speculative physiology that may prove just as inappropriate as other unproven approaches.

 

Interesting summaries as it gives the gist someone who saw the whole thing took from it.

The "lots of Maeve believes" stuff just reminds me of the Chalder/Gerada/Maudsley video to train GPs: Old Maudsley GP training video | Science for ME (s4me.info)

I just watched it back and at 8.38 it starts talking about the beliefs stuff, particularly her advice around 9.15 seems very similar to how many have describe their beliefs of what ME is here, and it is these 'different factors' that contributes to the severity (then she states later on up to 75% of people with chronic fatigue have depression or anxiety).

But another subtle but pretty important bit is 1min in when they don't mention the word ME but say you have people who have just tiredness and then people who are completely disabled 'they are bedbound all of the time' and then she says 'and at the other end of the spectrum you have CFS people' where she quickly infers its a boom bust, belief its the exercise type gambit.

EDIT: it's that making ME or anyone more severe 'just a gap we don't even directly mention' makes it pretty significant I think. Just like presenters are often taught for the moment you want people to really listen in then lowering your voice to be quieter and draw people in works better than doing the opposite. Who knows how deliberate it was vs they all just didn't know what to do as their model they knew didn't work for the less mild but by not mentioning it any further it likely might have been picked up a certain way by certain viewers.

I guess my question is was this used only for GPs or was it part of training for people who might be working in these roles in hospitals/are there other versions for those roles or other medical or HCP training do we know?

 

Nightsong clarified that she was not on the eating disorder ward, as referenced in tweets, she was in a medical bed for people with a psychiatric diagnosis of an eating disorder eg anorexia nervosa. These are for people who need to have inpatient admissions to increase their weight to a healthier level. This is usually based on BMI and percentage of weight loss in a certain time and are medically unstable, especially electrolyte abnormalities that can cause cardiac arrythmias. Once their weight is gained they are discharged into community psychiatric care usually overseen by a psychiatrist with specialised training in eating disorders, this can be at home or in community eating disorder unit which has no security like a psych ward and people are free to come and go, eat or not eat etc They receive group and individual therapy and psychiatric care with their medical needs managed by their GP. People may be under the mental health act in a medical ward or come in voluntarily by agreeing to medical treament. Usually the MHA process is stopped once they are medically fit for discharge. Some, if still a risk from other psychiatric conditions may go to a psychiatric ward until well enough to become a voluntary patient and discharged into community care.

I do agree @bobbler they are very confused about her illness, and all the staff appear to have a false mental construct of ME and wanting to treat her as an eating disordered patient with the waffly gut brain axis research, which in my opinion, does not support their ideology for the biomedical model ME or IBS or whatever. To me, it's just speculative stuff to justify their diagnosis and put on the label "functional". Particularly the gastroenterologist, I see at fault for the delays in treatment but it seems the treating consultants brought into this consultant's opinion and did not listen to the ME specialists. There appears to be no medical consultant that continued to take responsibility for M on discharge and so never saw her in outpatients and oversaw her care. They left it to the GP who does not have the power or authority to tell the inpatient specialists what to do.

I also agree this is stigma, writ large. They ran around thinking she was psychologically unwell, so not just treating what was in front of them - that is abit rubbish imho, they say this but their heads are full of psychological theories and teachings on ME and that ME is a mental health problem. Some of their answers that all illnesses have a psychological component is just puff-speech, imho. Really dig down into these so called factors and most wouldn't really stand scrutiny, it is just what they are taught. And they never seemed to listen to her mother when M was not able to communicate for herself due to her severity of ME and when M was more able, her pleas (and her mothers' pleas and her GPs' pleas).

I note the dietician saying she would get better care if she was considered to have a psychiatric disorder, well I am not sure about that either, as people with mental health problems are often as stigmatised as pwME and mental health is very much more poorly funded than medicine. It is in my country and what I read about the UK,, is not much different. Often this stigma is entrenched in some medical doctors. I have seen this often as a psychiatrist, it is sickening and I usually called them out but many didn't care, basically they just expected me, and the service I worked for, to take "functional" people off their hands and off their wards. One of my fellow colleagues came up with a phrase for medically unexplained symptoms and the functional diagnoses thrown around by medical doctors - "these are psychiatrically unexplained symptoms".

I also think the problems with the uncertainty over the pathophysiology gives them space to create what the want as a mental construct, reinforced by the BPS brigade and anyone in the wider MDT who talks about psychosocial factors like they are some expert in that person's life and don't bother trying to understand what is going on for the person is also at fault, imho. Just stick a label on and move them through the system and hope nothing bad happens. Something bad is happening all the time to many of us, who will take responsibility?

edit typos

 

Oh hang on. I've just googled and ended up with the following BAPEN page: Enteral and Parenteral Nutrition | BAPEN

This seems like a page 'above' ie that someone might find before the one for just parenteral nutrition.

And it is a lot stronger in its warnings about how dangerous PN is and how much safer EN is:

and much more specific about when to use it than the page just on PN, listing what seem like structural issues only:

 

That reads as fear of developing locked-in syndrome. This is a devastating complication that has a number of potential causes. VS-ME/CFS could be regarded as approximating most of its important features even if the mechanism is completely different.

 

.
MEResearchUK have published an overview of the Inquiry, and a narrative in quotes with media links for Weeks 1 and 2 of the on-going proceedings.


Overview
https://www.meresearch.org.uk/coroners-inquiry-opens-on-death-of-maeve-boothby-oneill/

Week 1
https://www.meresearch.org.uk/how-c...by-oneill-unfolds-in-quotes-with-media-links/

Week2
https://www.meresearch.org.uk/how-c...ll-unfolds-in-quotes-with-media-links-week-2/

.

 

And it is interesting when looking for where 'PEG' is, as some have mentioned it here as the missing middle option.

It seems to be under the enteral feeding pages. But these also are marked with due for update, but are less easily readable as the options are organised into hyperlinks by categories such as 'types of tube' then 'types of feed'
Enteral Nutrition | BAPEN

Anyway, when you get to the page that I thought would mention PEG (types of tube) there isn't much mention of it, apart from there being two links at the bottom which are just hyperlinks without a name posted over it to better explain what it is. And both of these links lead to dead pages (404 error 'not available'). I don't know how long these haven't been there for.
Access Routes/Tube Types | BAPEN

I'm trying searching the webpages for PEG, but of course if it is all content done via links that haven't had tags added, or been named and are just raw urls then it won't be picked up if someone isn't using the exact term. Here is the link to the page I (and others searching 'peg') get: Login | BAPEN

I did think this was worth highlighting tho, it is the first thing that comes up when one searches 'peg' on this website:
Joint Statement from BAPEN & BSG on PEG insertion during the COVID response

Only those who are members can read this. SO I don't know whether anyone here can?

I have used the title in google and found the following pdf - whether it is the same thing or not, I think it might be worth a read.

bapen-bsg-peg-letter.pdf

It starts off with the following lines, which seems interesting and relevant:

I need to check with moderator if I can post the whole content here as a file?

Am going to make sure that I've wayback machine'd it

 

And there is something mentioning PEG in Covid patients here from May 2020: covid-19-and-enteral-tube-feeding-safety-13-05-20.pdf (bapen.org.uk)
I'm flagging because it notes other guidance they might have received at the end of this first para. Link: https://www.bsg.org.uk/covid-19-advice/endoscopy-activity-and-covid-19-bsg-and-jagguidance/ the link is dead when I click through but seems to be from the following pages: COVID-19 (thejag.org.uk)

It's also a reminder of how covid might have had its own constraints on these things etc. I guess (proning issue, and the 'aerosol generating procedure' issue).

I'm guessing there would be later updates to this as the pandemic went on, but not in a position to trawl further from these links to see.

 

It is 10.25am on Thursday 1st Aug. The camera is on Sarah Boothby but proceedings do not appear to have begun. About 15 minutes ago the camera was on the coroner who was engaged in a private conversation with an ?official. Anyone know what is happening?


edit: Sarah is speaking but from a seat in the court. Does not seem like a conversation so is she giving her evidence from here? No one else is visible. Anyone? Has anyone got sound?

edit2: Have just seen a notice flash that transcription has started.

edit3: Am now preparing to leave for a prior engagement so not available here. Good wishes to Sarah and Sean.

 

I read this as it is her ("M's") fear of being locked in, not like locked in syndrome.

When I am bed tethered and bed bound , I often feel locked in, literally to my body and brain, cognitive function is quite limited, it is very noticeable to my partner and people who know me well. I can only imagine what it may feel like if I was very much worse - totally bed bound due to ME and unable to communicate, even with the smallest of whispers or gestures.

It will good to see the transcripts of the case which will be made public when the coroner reaches a verdict. (I presume they will be publicly available?)

 

Not a moderator but here is the relevant forum rule.

"Rule 7: Do not violate copyright law
It is not permitted to post entire copyrighted articles or PDF files, but full abstracts from research papers may be quoted so long as the original source is credited or linked to. Under "fair use" doctrine, it is also permitted to quote sections of copyrighted material, but it should be the minimal amount necessary to support or illustrate your commentary regarding the content. Linking to sci-hub or other third-party sources is also permitted."

https://www.s4me.info/threads/forum-rules.301/

 

I agree, it has the potential to be a serious form of abuse.

For a start, capacity isn't a fixed thing. People may have it some of the time but not others. People may have capacity to make some decisions but lack it for others, often with uncomfortably hazy areas in between. Anyone caring for a person undergoing a series of surgeries or living with dementia will run up against it. The way forward is usually to assume that capacity is intact unless you can show it isn't.

The frightening thing in ME is that, as with dementia, the situation is very easily manipulated by people acting in bad faith. Or people who belatedly discover a need to cover their arses. It's so easy to drop in words like 'psychological problems with eating', isn't it, and so much harder to show that they're wrong.

 

It had been referred to as an eating disorder ward in most cases through the inquest until Tory Riches (clinical matron in emergency dept) was questioned and she then tried to say that it was actually primarily an endocrine ward but as more eating disorder patients were put on it over time then it became known more as an eating disorder ward. But she was intimating that it wasn’t because really it was endocrine.

And because the two wards being discussed were next to each other and people would be going between then essentially Maeve wasn’t missing out on any specific nursing/treatment

 

Has this been confirmed?

See: