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

Trish said:
I'm sure you've read many cases, but would it help to formulate a set of questions they may be able to answer to fill in gaps in the picture, particularly of management strategies that help them?
Click to expand...

Thanks @Trish

People here with experience are chipping in at appropriate points and that is helping me to get a broader idea. I may put together some questions before I edit my article.
 
MrMagoo said:
Twitter has no updates, lots of people having issues with being thrown off the feed.

Looking back at this morning, it seems Dr Fox said something about side rooms being needed for “real” illnesses
View attachment 22645
Click to expand...

I heard him hesitate and stumble when he got to that. He may have said 'real'. He may have meant to say 'real'. He corrected whatever he said to that they were being used for Covid patients.
 
Sean O’Neill asks if risks of feeding amplified over risks of not feeding Maeve?
BT- Oral feeding less risks than enteric

Sean O’Neill asks any contingency if N failed?
BT- No, if NG not tolerated unlikely to make it through PEG, risks outweigh benefit

IMG_2924.jpeg

IMG_2925.jpeg
 
IMG_2927.jpeg

Hospital Trust Rep/Lawyer asks Beth about her “rock and a hard place” email

Maeve is taking vitamins but not water, what was difficult to understand?

BT- it’s the same mechanism, you still have to swallow



BT is released.

Sarah Clarke “SJC” is appearing via remote access as she has Covid. She’s sworn in. she was a community team manager and a registered mental health nurse, employed by DCC
IMG_2928.jpeg
 
Last edited:
Jonathan Edwards said:
.
When I say intolerance I am thinking of something impossible to overcome, rather like the intolerable hunger people can get after surviving craniopharyngeoma (hypothalamic damage). These people if left to themselves cannot avoid becoming grossly obese. No human can resist the hunger. In ME/CFS I think what health professionals do not understand is that there is an equally impossible to resist need to avoid certain stimuli. Another example of such impossibility is standing up if you have sever knee pain. It is not simply that you cannot stand the pain. Neurological signalling that you have no control of, or even awareness of, blocks the muscle contraction and prevents standing.

I think maybe the needs of people with ME/CFS need to be explained much more in terms of the actual experience of the patient. The problem IS the symptoms, which include both feeling terrible and blocks to function at a reflex level..
Click to expand...
The cravings/hunger I get few hours after carbs only happens then but it is similarly irresistable, I had never before experienced anything like it, get frantic, and 'snap out of it' shortly after eating. According to the endocrinologist that is not unusual...!

Eta: so I guess my question is, what is the use in explaining it in detail if it is to be dismissed
 
Jonathan Edwards said:
What seems to be missing from the accounts given in guidance documents is that there is a third type of problem in addition to structural gut failure and the disordered thinking of anorexia nervosa. The more I hear the more it seems to me that it is the symptoms of intolerance that are the both the beginning and the end of what matters. For people with very severe ME/CFS feeding may become intolerable, for reasons unknown and several of them.

Standard policy as written out at present steers past what is needed for ME/CFS.
Click to expand...

Exactly this.

Once you accept the reality of the intolerance symptoms and you don’t know the cause, then mitigation of the symptoms is the most fruitful avenue. For my late wife this meant ‘Pacing’ to mitigate effort intolerance and the identification and removal of any number of environmental intolerances to chemicals, medical treatments, foods and even brands of natural spring waters. She discovered with help from Professor Brostoff and his team in the early 1990’s that provided she limited exposure to individual foods, chemical etc she was tolerating to a 24 hour intake period every 7 or 8 days, this very much slowed the development of new intolerances to those foods, chemicals. Following this advice, difficult and inexact as it was gave her a reasonable quality of being for another 25 years or more. Downturns were a regular feature and needed considerable detective work to identify and remove the culprits. In downturn then other intolerances increased like sensitivity to noise, light and touch but decreased when the culprits were removed.
 
28 Jan 21 after concern from C Parker and Helen Lord Safeguarding concern raised about potential psychological, financial, physical abuse of Maeve, by Sarah. Met the “Care Act” criteria [for safeguarding] SJC was the Safeguarding manager

Maeve’s records in the Council were locked, this appears to be best practice and also Sarah was a council employee at the time

Sarah made a call re: safeguarding 10 March which was closed until September

IMG_2931.jpeg

IMG_2932.jpeg
 
Last edited:
Haveyoutriedyoga said:
Eta: so I guess my question is, what is the use in explaining it in detail if it is to be dismissed
Click to expand...

I don't follow the question quite.

What I am saying is that health professionals need to face up to the intolerability being undeniable and impossible to overcome, just as a man with a septic knee cannot walk. If the discussion gets sidetracked into whether the mechanism is blockage or faulty thinking then the real problem is never acknowledged. The justification for PEG would not be a 'non-functioning gut' but an impossibility of using it.
 
Sean said:
How did this not internally trigger a major overhaul by the Trust of their handling of ME/CFS cases?
Click to expand...
So far from the comments there is no indication that anyone involved thought that they did anything wrong. Some clearly think that others, generally, didn't do everything right, but no one seems to find fault with their own behavior.

When no one did anything wrong, there is nothing to change. It's the same pattern of behavior we see on a big scale: a complete and total refusal to even consider accepting that this is a legitimate illness, an absolutist, intransigent position. They let her die because of their beliefs, and they will do it again and again. This complete lack of contrition screams it. Not the MDs, not the ward, not the hospital, not the local or the regional systems. They didn't even bother reading anything about ME since, while facing a medico-legal proceeding, so sure they are of being protected because the institutions are just as guilty as them. They're reading from their own notes that explain why they did what they did, and still they pretend otherwise.

Psychosomatic ideology has become such an extreme block on progress that it can only be met with extremist behavior. For decades at every single opportunity every institution has simply doubled down, the refusal to recognize the NICE guideline is an extremist reactionary response. Hence they ended up in extremist positions from which there is no backing down.

And they can have their cake and eat it too. The recent patient who died of euthanasia lived in Scotland, the coverage from the BBC included a quote about the NICE guideline and how everyone should get the care that they need. They obviously know that the associations, and subsequently the NHS, have refused to implement them. And still they hide behind it. This system is driven by cowardice and complete lack of meaningful oversight. Everyone is lying because here lying is necessary. It's all they have. They made decisions based on lies and justify them with more lies about their own lies.
 
Jonathan Edwards said:
I don't follow the question quite.

What I am saying is that health professionals need to face up to the intolerability being undeniable and impossible to overcome, just as a man with a septic knee cannot walk. If the discussion gets sidetracked into whether the mechanism is blockage or faulty thinking then the real problem is never acknowledged. The justification for PEG would not be a 'non-functioning gut' but an impossibility of using it.
Click to expand...

I think you answered my question. I was picking up on your thought;

I think maybe the needs of people with ME/CFS need to be explained much more in terms of the actual experience of the patient. The problem IS the symptoms, which include both feeling terrible and blocks to function at a reflex level.
Click to expand...

and giving my example (albeit not as serious as others' feeding issues) of having explained, to a professional, in detail, an irresistible and troubling urge to binge as a reaction to eating a type of food. Explaining it didn't seem to do any good because it was processed by them in a way that led them to tell me it was normal (when it isn't).
 
Tweeters are saying the content is difficult to follow, it seems Sarah is asking questions around Safeguarding and care and support (as in, why wasn’t there any care and support) JH (is this Helmsley?) is referenced, raised a safeguarding concern 1 June but the document is missing from Hospital docs disclosure?

In my opinion, Sarah knows the email exists but it hasn’t been disclosed/put in the bundle for the inquest.

IMG_2938.jpeg
 
Last edited:
Kitty said:
You don't need a medical qualification to know that a combination of stresses can be experienced as intolerable, and that illness makes people infinitely more susceptible. If the individual happens to be 14 months or 94 years old, even hospitals seem to grasp this; they don't demand a medical rationale or have an inter-specialism pissing contest over it, because it's just ordinary compassion. I know it isn't enough in a case like Maeve's, but it's a start.
Click to expand...
Every hospital in the world has signs and rules about noise: be quiet. It's heavily enforced by staff and with good reasons. They understand all the basics involved here, they're just trained to ignore them because of the psychological exemption. This is what the comments about 'medicalizing' are mostly about, it's about respecting those protocols and taking them to their logical conclusions.
 
Haveyoutriedyoga said:
Explaining it didn't seem to do any good because it was processed by them in a way that led them to tell me it was normal (when it isn't).
Click to expand...

Yes, I see your point now. And it is very important - the need is to get across to those who think they know the answers the fact that the intolerability and the types of sensations that mediate it is not occurring in a normal way, even if something rather like it does occur normally non response to potent stimuli, like vomiting with food poisoning.
 
You must log in or register to reply here.
Back
Top Bottom