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

I think it was in an email exchange between Beth and the senior Gastroenterologists

My guess would be it refers to Maeve and mother. Beyond that I don't know sorry.

 

Some coverage of today's testimony in the Telegraph:

https://www.telegraph.co.uk/news/2024/07/31/consultant-not-anything-medically-wrong-boothby-oneill/

And for anyone who's hitting the paywall:

https://archive.is/20240731194844/h...-not-anything-medically-wrong-boothby-oneill/

 

The parallels with Joseph Heller’s satire of bureaucratic insanity are perhaps closer than the dietician intended.

 

they said he was coming out of respect for the parents, is what I heard.

 

I have observed one PEG being placed. Sedation - not anaesthetic - was given. Endoscope put down into the stomach. Light on the end shows where the incision needs to be made. Local anaesthetic at the site. Small incision only. It doesn’t take long and in my experience is much better tolerated than NG. Here is a link to the insertion procedure https://medlineplus.gov/ency/article/002937.htm

 

Do you know what his role is Dave? He gets a lot of mentions, but hasn’t he been called to give evidence?

 

Thank you. So obviously it’s not great but it’s “tolerable” if you were faced with it. Not exactly an operation, and just a local anaesthetic.

 

Devon Live. 3/12/2023

'Death prompts Devon hospital chief to speak out on 'ignored' illness'

'We highlight the case of 27-year-old Maeve Boothby-O’Neill on International Day of Persons with Disabilities (December 3)'

'... A lack of care for severely ill patients with acute Myalgic Encephalomyelitis (ME) and an urgent need for change has been highlighted by a hospital chief during the pre-inquest of a 27-year-old Exeter woman who died while battling the condition. Dr Anthony Hemsley, medical director of the Royal Devon and Exeter Hospital (RD&E), is calling for action at the 'highest level' to meet the 'gap in service'.'

https://www.devonlive.com/news/devon-news/death-prompts-devon-hospital-chief-8940687

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I think a lot easier to tolerate than having a tube through your nose and down your throat…. And the sedation means most people don’t remember the insertion procedure. The main barrier I have come across to PEG insertion in my previous working life is insufficient respiratory function. So those patients with MND who wanted PEGs were encouraged to have them put in promptly before the respiratory capacity became a problem for the sedation. And then people still ate and just flushed the PEG until they needed to use it.

 

Often done laparoscopically-assisted by our surgeons, requiring general anaesthesia, as it would with the endoscopic-assisted version (edit: in children).

But it doesn't have to be endoscopic (the E in PEG), it can also be via interventional radiology ("PRG" - percutaneous radiological gastrostomy).

CAUTION: medical procedure — see this YouTube video as an example.

 

Nasogastric tubes can be inserted with oral and IV sedation on the ward, without specialist input, not enough to put you to sleep but to take an edge off the anxiety and unpleasant sensations that occur. Sometimes local anaesthetic is sprayed into the nose and throat to start, but from then on, pressure is used to push it through nose and down pharynx, very unpleasant as you want to expel it or cough it up. You are then asked to swallow and it is pushed through past the back of the tongue and down the oesophagus and then down into the stomach. To check it is in position, a syringe is used to sample the gastric juices and test they are acid (pH test). And then you need a chest Xray to make sure it is indeed in the stomach and not in the lung bronchi.

PEG's can be placed by a gastroenterologist via endoscopy. The patient is sedated with IV medication in a sterile room in the gastro clinic and local anaesthetic applied to throat. The gastroscope is passed through to the stomach, the gastroenterologist makes a small cut to the skin of the abdomen and then through the wall of the stomach. And then the PEG apparatus is placed.

Some patient info and pictures here:https://www.ccdhb.org.nz/our-servic...nts/understanding-peg-patient-information.pdf

 

Thanks. Although a moot point in a way, nobody gave Maeve the option.

 

Just offering information. Not trying to make any point.

It is all heartbreaking. Maeve knew she wasn't, and wouldn't, be getting any care from the treating medical teams or the council from quite early on. Efforts to try and make them address this, failed (or got magically lost...). She felt her only option was to go to a hospice and die. That is unacceptable when there were options to improve her nutrition and help her regain weight.

I am hoping the coroner clearly states this too and holds the responsible consultant to account (and many other clinicians from what I have read here also need to upskill themselves). There are also some seriously major gaps in provisioning and providing care to her and her family as an outpatient, i.e. in nursing and dietician care. Lots of policies that have effectively hamstrung them into inaction. I doubt they reviewed any policies even when the NICE guidelines for ME came out.

 

Oh I know you were. But the only PEG references were along the lines of “she wouldn’t have been able to/it involves x-rays and sedation” yes it would have been awful but I think she’d have given it a go. She endured the NG.

I don’t know that she wanted to go to a hospice to die, I think she just wanted to get out of the hospital and go somewhere to be looked after with less going on around her. Many hospices have well-trained nursing staff and Drs, but not all.

I suspect the Coroner will be very critical of the Hospital and DCC’s processes and procedures. I’m not sure she will single out individuals.n I hope she does write the Prevention of Future Deaths s28? Notice to the NHS.

here is an example of one by the same coroner to the Dept of Transport
https://www.judiciary.uk/wp-content/uploads/2018/06/Evelyn-Fisher-2018-0036_Redacted.pdf

 

Yes, I do think she wanted to give anything a go. She knew she didn't have the physical capacity to do so, at times. (And we all understand this due to our experiences with ME). The Physicians who specialised in ME, Dr Weir and Dr Strain, explained it to her treating consultants on multiple occasions. I do think she become more and more physically unwell (and the lack of nutrition would have contributed to this!) and I have read she had mentioned hospice care at one point but they wouldn't take someone with a NG tube (goodness knows why not). I think, but I don't know, that she saw the impossibility of it all and had no choices left and also perhaps to relieve some of the burden on her mother/family. Impossible situation for her, her parents and her GP. Hospice care is for end of life care. Yes, they have good palliative care doctors and nurses but they are used when all medical options for a terminal illness have been tried. I don't believe she had a terminal illness. If she had received adequate nutrition in a timely manner, she would still be alive.

If the coroner thinks there is grounds for medical misadventure or failure in duty of care etc she may proceed to take the matter further. In my country, if she had evidence there are concerns about a doctor's practice or behaviour, she would pass her complaint to the Medical Council. (GMC in UK) and they will decide what disciplinary process will occur. Medicolegally, the gastroenterologist is not an expert specialist in ME, and he openly said he had no experience in ME. There is no evidence given during this coroner's enquiry, that I have read, that he took the time to examine the clinical practice literature for the medical treatment of ME. He did not take the disability of her ME into account when advising the admitting/treating physician on a course of treatment (which was basically non-treatment). He believed her medical illness was psychosomatic or due to psychological factors and I haven't read if he got a psychiatric opinion on that, which would be the necessary to support or refute his opinion. CL Psychiatry was involved, but all that I know from here, is that their involvement was solely to test her mental capacity to consent and make decisions on her medical treament. In a medicolegal setting - they will ask him why he didn't, so saying vague things like ME is a contestable illness or psychosomatic would be a weak defence when you have Physicians with many years of treating pwME (and who had been treating her within their professional scope of Medicine), with established medical treatment used worldwide. And if there was a psychiatric opinion that she had no psychiatric disorder, he would be on rocky ground. These cases can cause change in the medical community (sometimes worldwide, eg. in Commonwealth countries) as other physicians are challenged in their view and if they know they could be held accountable for outdated views on an illness, will be forced to upskill themselves. Ignorance is not much of a defence, the onus is on the doctor.

I do wonder if the "CFS" ward the community dietician referred to in his testimony may have been a useful place to regain her weight. It was at the Bristol Infirmary. From what I have read on the forum perhaps it would not be a good place... but perhaps a properly funded long term bed (6 months) rather than being admitted to an acute medical ward (time after time with different medical consultants), may have been a reasonable option. Some of the commentators on here may have more of an idea if the ME/CFS specialists there are good ones (and not the CBT/GET kind). But then why did Dr Strain/Weir not suggest that, or maybe they did and was not listened to. A lot of information is unclear but I am very grateful to the people who have shared their time and energy to listen to the court live, summarise and post. I know it is not easy to do, but important to do.

 

There seems to be a lot of trying to justify 'beliefs' by muddying them, toning them down and trying to avoid dotted lines being drawn between actions taken/not taken and potentially gut instinct stigma/ideological paradigms.

Does anyone know about how inquest work and whether for example something like the 2015 Academy/Institute of Medicine report that examples and defines that stigma as being a major issue needs to be entered in, or whether said knowledge would already be known etc?

 

Could I get yours and anyone else who might have some perspective on it about the comment earlier on said by a witness that was something along the lines of 'it was unusual she had mental capacity because brain fog normally means many/most with severe ME don't' ?

I find this comment incredibly worrying for a number of reasons, and then I add in the catalogue of things that happened like her being put on an eating disorders ward, the gut-brain and functional blather and people talking about avoiding 'medicalising'.

But to go back to this specific issue: I thought that the mental health act was in place for those who did not have capacity to understand and make decisions. It is not intended to be a test at a point in time dictated by someone else where said person might have had light, noise and over-exertion and they get asked questions and tested on how well they seem to speak. Under that situation you'd have anyone with a terrible flu who got woken up in the middle of a deep sleep staring at bright lights being drawn under it.

Saying 'I can't think right now but could you come back after I've slept or leave some notes for me to look over' should certainly be counting as sensible adjustments and not at all as any indication of capacity.

Even though I've been worried about what has been moved under the term mental health when it for example is neuro and cognitive eg slowness but not distorted thinking it should not have allowed all norms not to be well aware of not being inaccurate and discriminatory based on not being able to differentiate and understand these differences - just thinking someone seems to speak slowly always used to be well-known as having nothing necessarily to do with them being allowed to make their own decisions etc.

In fact it isn't supposed to be catching out people whose speech is affected for example after stroke but are able to make their own decisions, or even those who have an illness that is a form of 'locked in'.

I thought it was very specifically something that was to only cover people who were unable to understand in a sensible timeframe the risks and benefits of decisions, or whose behaviour might be very risky to others.

How could it happen that just ill people could get drawn under something without a heck of a lot more political and legal debate being required because this just widens the scope hugely beyond what it was ever precisely intended for, dragging in by definition potentially all range of conditions and people who I don't think it was put together for unless it is only being used on people over whom there is also already a stigma (and still then it is supposed to have nothing to do with that)?

And just like putting someone under arrest or work performance etc continually would be stressful, it shouldn't be something that so many players are allowed to be so muddied about that it is happenning left, right and centre to those who shouldn't be covered by it with observation most normal healthy people wouldn't allow because it's a 'someone sneezed wrong/worded something in a way that was misunderstood' situation by the looks with the notes that are going on by people who should have been focused on compassionate care (which involves empahty ie the opposite of this attitude) actively it seems looking for things to catch them out on like FII.

Am I the only one who is finding it disturbing that noone has pathed out and blue-printed the effectively hostile and risky environment these I don't know what they are if they aren't stigma (probably called good intentions or 'I didn't know') that someone in this situation is having thrown at them ? It certainly sounds like the insinuations from those who wrote the old guidelines and pushed certain materials, and basic bigotry some individuals just bring from themselves, was weaponising every element and power of the mental health label, whilst desperately looking for justification of it, over or maybe at the same time as treating the problem in hand, but thereby causing all sorts of extra problems.

Does anywhere anything look at the cumulative harm all of this does, and what the receiving end experiences/how it affects their care and health?

 

the locked-in term is interesting, was this @MrMagoo used by Sarah to describe Maeve fearing not having a chance to go through a plan of various contingencies in case she wasn't able to communicate in future ?

 

Earlier there was a post by @Jonathan Edwards about intolerance.

I wish that we had persevered with SEID for use by healthcare professionals. It would have created a unifying concept of physical intolerance to help with management.

 

I think they might have been onto something here zeroing in on these for questions. The olde 'treat the person not the condition' is of course just a catchphrase HCPs chant when not meaning anything, but I'm sorry it also makes me think of the 'got to the exorcise the bad thinking' type ideology/'beliefs' going on as if that's the underlying condition (whatever sop muddied version you say when asked your beliefs) and then you realise the person underneath all of that isn't faring well, so well worth probing further?

Is there any more context here, and do you know what might have been meant by the 'I do think we need to change their expectations'. WHo was 'their' in this instance, Maeve and Sarah or eg other HCPs?