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

I don’t know what secret texted is but JM is a bit of a problematic personality.

 

People made some guesses as to who the person who texted NICE at the eleventh hour in an attempt to get them to shelve the new guidelines might be. Unless you want to be in legal hot water or moderated off the platform keep your guesses in your head though.

 

Yep that one needs sorting doesn't it. It is being used as a way of effectively having your fingers crossed behind your back when you make a promise (so that you don't then have to keep it). Of course it feels like that same principle applies to the 'best medical care' for said functional anything, I struggle to believe they can really believe a bit of 're-education' should count as any kind of medical treatment or is of any use either.

 

I feels like 'what' was causing the feeding issues was obsessed over like a philosophical debate rather than treating them before investigating.

I'm trying to think of other examples where this sort of thing is important and I guess there is blood - where according to medical programmes if things get urgent enough then you top up the lost blood even if you haven't found or fixed the cause yet, and I assume the same is true of oxygen/breathing. You might have a bit more time in hand with feeding but it does seem rather a strange approach to dive yourself into a condition you don't know rather than do the bit you can and stay well clear of questioning what you are ignorant in.


And I'm afraid I think there is a problem in 'problem-solving approach' that people are being actively taught

I find it quite difficult that so many of these individuals were supposedly experts in nutrition, the number one understanding of which as an area must surely be: that people must get nutrition and hydration and can only go so long without getting it. And the next deal-breakers/aspects to contend with are functional limitations. This is where that term 'functional' is problematic isn't it rather.

They didn't need to understand why sitting up for long made her iller, but they did need to accept it. Instead of accepting the need for it regarding drinking they did tests to prove it wasn't needed. Something about that term functional - in their interpretation of it - made them believe that exempted them from having to accept the situation and the need.

Was the issue that: I do guts and for that level of problem there this is what we offer, with no acceptance of the other symptoms that were (due to the ME) making those not possible. The idea some 'helpful' souls decided they'd make her practice sitting up is hauntingly ignorant. I feel so cross that noone will ever have a quiet (as long as it is going in and they are listening) word to those who did this, thinking the classic vomit-inducing 'good-intentions', so that they are forever aware of how dangerous that was and would be to do again.

Was that because gastro didn't simply accept that limitation and come up with a plan that accommodated it? It's that classic 'can't accept no as no, or can't as can't without testing it' we all experience, or hoping if you ignore it (not fitting with the manual of how you'd want to treat if the issue wasn't there) maybe the problem will go away. These things don't sound logical without inserting someone believing the functional limitation or that it 'could be fixed'

If there was a pro vs con then surely that would come down to informed choice/consent and giving both options?
particularly in situations where the patient might know more on their condition and health than the clinician. Do clinicians not have that 'out' in such circumstances where they might be confused or torn on things like quality of life, or burden involved with upkeep for certain treatments?

It's worrying the 'wouldn't/mightn't have changed the outcome' talk watching how that might play into people who might be in denial still, or worse convinced they did all the right things. Of course Maeve can't now prove that if she'd been treated fully in the March she would have lived longer. But it certainly does feel like someone needs to be making clear that not doing so was the incorrect decision. For the wrong reasons. The least they can be told was that it wasn't the best care they could have offered.

 

I also can't help but wonder is nomenclature playing a part re: these brain-gut theories using that term? It seems in the gastro/BAPEN stuff there is a different interpretation of structural vs functional, than the use of functional above as per 'functional limitations' - and that is confusing matters as if the only causes of needing feeding support could possibly be 'structural gut issues' or is it that they either only have a pathway for that and aren't commissioned (is that the term) so push it to another team to 'fix the functional problem', or that they believe if it isn't structural then functional = brain-gut and is fixed by 'robust psychological support'?

To me I find that seems to leave quite a lot of gaps. And it needs reporting on if those gaps are intended and I haven't read that incorrectly that it could be interpreted that way.

It surely couldn't be that plain old word issues, and ambiguity/adding a second meaning onto one word, could play a part in this sort of thing? because that would mean if functional limitations do get confused with conversion disorder being called 'functional' there would be a disability rights problem surely.

The use of the same word might be accidental, but confusion could theoretically be catastrophic? Someone with the word 'functional need for nutrition' scribbled on their notes and referred off to gastro because they've broken their jaw in a car accident and have other limbs in casts might be self-explanatory enough.

But, particularly given that wards people are referred to initially might be reassigned through the bed-management process, I'm just imagining how many potential other conditions or combinations of them and injuries could come unstuck if this misinterpretation/miscommunication of the term 'functional' is possible.


It's also worrying that the 'functional' claim as being part of it could theoretically cover so many conditions, many of which I bet most of them also would claim they aren't experts in - maybe all the obvious ones have managed to cobble together riders to make sure there is a pathway for them to follow, or do they have their own staff for this within their units?

Surely if this isn't the case, and this 'presentation' of no structural is actually being treated equally then we'd be hearing of loads of successful other cases who miraculously could what suddenly swallow to take things orally following practice sitting, or lots of other deaths.

Or maybe if they get shoved off more successfully under a mental health label we then never hear from them because that is so effective at people writing it off as 'bless you can only do so much if it was mental health'. Then there is people who can't communicate well and don't have others who can for them etc.

 

Seems a fair list. But I'm no expert.


Does anyone know how many patients with very severe ME Alastair Miller has treated?

And I guess what he had to offer them/his expertise is in?

 

it doesn't add up with their trying to practice her sitting up either. or the notes written about her.

 

this is what is needed. I won't cause upset by putting here what I get as a response from some when I mention an individual case that has been in the news to a friend. But hasten to say they are trying to reassure me 'that wouldn't happen to you' basically because they assume there is something unique about an individual case, vs lots of doctors, there is that space for cognitive dissonance.

Mapping more cases and situations I think at least shows up the myths, particularly ones like Alastair Miller with his 'OK, now the rest has been debunked let's compromise on a bit more CBT', not working. And people, real people, being caught up in the problem which isn't of their making.

 

I'm also curious whether experimental is defined as 'for those with ME/CFS' (noting that at that time there was the draft new guideline which was being held up being released by protests, so technically the old 'don't encourage them, important not to investigate' guideline remained) or 'for anyone else who presented being that ill'.

I would appreciate if there were concern along the lines of things like 'but those with ME/CFS might be more sensitive dose-wise' or 'had specific sensitivities' or the olde stimulant type issue (causing PEM). But how experimental would things like saline or fludrocortisone be in the same situation/symptoms/problems if someone didn't have ME/CFS?

 

I'm cautious on this until I see the advice being appropriate. One half of the issue seemed to be beliefs, whether it was put in the decision or not, that the problem was functional.

Can anyone reassure me with more detail that there has already been confirmation from the coroner for example that practicing sitting someone up wouldn't help the ME or change the functional limitations with sitting up. And because of what I see from too many I feel I have to add: no matter how gently or gradually or whatever other adverb they want to add in.

 

Would we say that these are evidence-based or even 'have a good evidence base' such as there being papers pointing to where this resulted in good outcomes long-term? I say this particularly in relation to the last lines - ie the part you note that you disagree with?

And can't help but ponder on the numbers vs perhaps the number of clinical examples those who might be ignored as 'ME experts' might have based their experience on?

Plus of course ME/CFS isn't a functional disorder. Unless someone misinterprets the term ?

 

There were also lots of reports regarding Do not resuscitate orders, eg this sort of thing: Doctors Issuing Unlawful ‘Do Not Resuscitate’ Orders For Disabled Covid Patients ‘Outrageous’ (forbes.com)

and this: Fury at ‘do not resuscitate’ notices given to Covid patients with learning disabilities | Coronavirus | The Guardian

Covid patients wrongly issued with ‘do not resuscitate’ orders, watchdog finds | The Independent

Coronavirus: Autistic support group 'told it needed DNR orders' - BBC News

 

Do we need a global database of these cases that is updated annually?

 

Yeah.

It seems like they would have to know that this is and would be a diagnosis that is dangerous to the physical health of the patient.

I think they justify this by imagining all sorts of lurid and fictional outcomes that would or could happen to a patient who isn’t told, look honey you’re imagining all your symptoms.

Then, knowledge of delayed diagnosis of medical problems resulting in fatalities and premature deaths for these patients can fade into the background as concerns.


I think what it comes down to is that they are diagnosing a person defective. This is why whenever medical doctors or psychiatrists get sick with the same symptoms as the patients that they have been diagnosing as hysteria (conversation disorder, functional disorder) or hypochondria (health anxiety)
they suddenly take a different approach to the ‘gold standard’ one of behavioural interventions and denial of medical intervention, that they’re been busily dishing out.

These doctors are diagnosing a person, not a condition. Different person different treatment priorities.

 

What secret texter, sorry? do you mean the Good Law are in cahoots with BPS school people ?

 

I found the Mirror article interesting. Another woman with Very Severe ME was admitted to the RD&E in 2023 and they refused to do NG feeds below 30 degrees.

The only reason they changed it was a Change.org petition from the ME community/family and friends.

Sort of makes their claim, (the physicians) about how they have changed their practice and allowing it now and all the changes made since Maeve's death, seem rather farcical to me. I wonder if the Chief Physician of the Trust is going to parrot the same.

The other part of the evidence that keeps playing on my mind is a comment referencing the medical team (doctors and nurses and other staff) and this is not a direct quote but something like "we finally worked out it was ME". Umm what did you think it was? not ME the diagnosis she was admitted with via the GP? on her medical records? as she had been under a ME/CFS clinic in a another trust and still on the books of an OT there?

What a strange statement - did they finally understand PEM and sensitivities etc or were they so far down diagnosing a functional disorder that when she wasn't suddenly going, "oh gee I won't get away with this made up behaviour, I will just walk on out of here" they had to have a rethink. (I may be overthinking this but just struck me as weird).

 

Not so much in cahoots. Just that they generally move in the same professional and social circles.


Also I think people mistake the Good Law Project as some kind of advocacy organisation for discriminated against people or groups.

But GL’s more of an organisation to take on the government from a specific political perspective.

So GL does launch cases that help marginalised people but that’s not its primary purpose.

 

'I found the Mirror article interesting. Another woman with Very Severe ME was admitted to the RD&E in 2023 and they refused to do NG feeds below 30 degrees.

The only reason they changed it was a Change.org petition from the ME community/family and friends.'




As the petition got underway (over 10,000 signatures), the BBC did reports too:

2023
'Family calls for feeding change to save Exeter ME patient'

https://www.bbc.co.uk/news/uk-england-devon-64809671



And then success, the hospital changed it's feeding policy for Alice. The RD&E really could not risk losing another ME patient from starvation due to refusing to follow lower/flat feeding angle practices that have been shown to be safe and work for a great many other ME patients.


'A hospital has updated a feeding plan for a woman with severe myalgic encephalomyelitis (ME).'

https://www.bbc.co.uk/news/uk-england-devon-64830022

.

 

I was thinking on the inability of the NHS to allow for ME 'disability' in access to treatment.

It's obvious from my own recent dealings that no one is reading the updated NICE guideline as they either don't know about it or don't care as it is not their 'Speciality'.

The NICE guideline is in their mind something that only applies to medics who treat ME and has nothing to do for when we present at hospital.

So, as an example when need medical care no one considers if we can leave our homes for medical treatment or if we can cope with A&E or wait in a crowded room for hours on an ordinary medical appointment.

Trying to explain to a Security guard in A&E that i couldn't sit up resulted in being manhandled physically.

When I had cancer I was on a NHS treadmill that didn't ever consider if I could cope with the conditions of being treated. That I fell off the treadmill was my fault in some way.

I 'should' have been able to cope with it like 'everyone else'.

When I listened to the NHS staff at the inquest I was struck by their inability to allow for the ME being a disability that made their standard treatment unworkable and their unwillingness to plan around it.

 

Im really sorry this happened to you.

I think the only way to change patient experiences is for there to be mandatory training for all physicians that clearly states: we were wrong about ME. Patients were harmed. Your training is outdated. Here are the facts...

Which of course would require systemic acceptance, which won't happen without a strong biomarker.

Its a complete mess. And so avoidable. Every time patients/orgs were ignored in favour of the Wessely school, more harm was done.