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

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.

 

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

 

Sean O’N - was DrRoy advising you in the background?
BT - At the time it was Dr Roy

Coroner asks whether a junior dietician should have been on this case at all?
BT says she’s always there to support her team

 

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

 

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

 

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

 

Coroner reading SJC email of 29 Jan 21 “she [Maeve] maybe unable to protect herself.

Coroner will be asking questions about this email/letter

 

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.

 

Coroner - was there a referral for safeguarding sent to the hospital?
SJC - they have their own safeguarding team, it would have been JH (Helmsley?) with those links.

 

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.

 

22 Sept 21 Safeguarding meeting. Parents not there. Number of medics present. No safeguarding concern, so move to support plan

 

Sarah Boothbyhas begun questions to SJC

 

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

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.

 

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.

 

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.

 

Maeve requested Safeguarding from neglect by DCC in Feb 21

(personally, this and the comment about the consultant with his head up his bum make me think Maeve was a riot and I’d loved to have known her RIP)

 

Coroner asking about safeguarding, reference to a letter JH 13 March

Social Care Can’t investigate the hospital for neglect, should have complained to hospital