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

anniekim said:
@ukxmrv, may I ask when you wrote above ‘Buying onto their belief it is a medical’, is ‘their’ referring to Maeve and is the dietitian claiming Maeve wanted her to acknowledge her ME was a medical illness? Many thanks.
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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.
 
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
 
Daisybell said:
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
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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.
 
MrMagoo said:
Do you know what his role is Dave? He gets a lot of mentions, but hasn’t he been called to give evidence?
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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

.
 
MrMagoo said:
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.
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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.
 
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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
 
hibiscuswahine said:
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
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Thanks. Although a moot point in a way, nobody gave Maeve the option.
 
MrMagoo said:
Thanks. Although a moot point in a way, nobody gave Maeve the option.
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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.
 
hibiscuswahine said:
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.
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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
 
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MrMagoo said:
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.
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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.
 
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Nightsong said:
Will try and respond to this very thoughtful comment more thoroughly tomorrow, but just a few brief points - I do remember bed-management teams myself (and how often they seemed like battleaxes sometimes!) but in this case M was promised a bed on what was considered a much more suitable ward & this had been agreed in advance. Bed management teams are necessary but should have been considerate of such rare circumstances as Ms. Also from the various descriptions Lowman wasn't strictly psych - I know media coverage & some Tweets said "eating disorder ward" but according to testimony both Bowman & Lowman were acute medical wards - Lowman's focus was diabetes & endo but was also the ward where pts on an ED pathway were placed - it seemed unusual to me but that was the testimony - wasn't well described by the witnesses but obviously the coercivity & relative lack of personal autonomy that prevails in ED settings would be very distressing if applied to someone with severe ME and who desperately wanted to eat but couldn't, as would the more social environment that prevails among ED patients so I can understand why M would have objected to such a placement.

M didn't spend all her time in a side room in the admission being discussed in my last post - requested but they were only able to find a quieter place on a bay, which must again have been very difficult for her. Various questions re DOLS scattered throughout the referenced notes but never came to anything - from testimony she was obviously consistently considered capacitous. I suspect a lot of the MbSP stuff came from the social workers themselves not understanding the sensory sensitivities & the severity & low-threshold PEM of very severe ME and misinterpreting being denied access to M at times, places & by methods of their choosing (which included extemporaneous in-person visits on at least one occasion) - but we will undoubtedly hear a lot more about that tomorrow.

Liaison psych did try to visit once while M inpatient (not sure if I wrote those notes up - it was discussed in Warren's testimony after the Teams disconnection/reconnection).
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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?
 
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Joan Crawford said:
Thanks for sharing.

This lack of curiosity and engagement baffled me for a long time. It infuriated me at times too. I was incensed by the flippant attitude of the Infectious Diseases doctors at Liverpool in dishing out 'advice' about suggesting I try CBT/GET. It was just wot they did. And they were closed to any discussion that this might be in anyway anything other that helpful, useful etc.

Even the consultant psychologist leading the cfs therapy service told them frequently that they did not offer GET since 2005. And cbt/other therapies/pacing where appropriate and only supportive, not aimed at cure. Ironically I was trained in CBT and could see that there was no evidence base. It was something for the ID doctors to refer too and to allow them to discharge. No curiosity or follow up. No support for my GP. Merely a somewhat misleading letter to my GP confirming diagnosis and telling them I'm fat and lazy, and unwilling to engage. No mention that I thought their support suggestions had no credible evidence base.

The lack of curiosity and interest is I think largely a self protective behavioural and psychological avoidance bias/response. If they don't look, they can avoid the scale and horror of the situation. It avoids them approaching psychological discomfort and distress. It also absolves them of the need 'to do something' if they don't know. When they do look, perhaps it is too big, too scary, too overwhelming and they opt out. Flight and freeze responses.

Ironically pwME are hypothesised that they are fear avoidant of activity. Perhaps the medical professional needs to take a wee look in the mirror.

Without interest, curiosity and knowledge nothing much is going to change.

We need curiosity and interest from trained minds to have light bulb moments. The more persistent doctors and researchers are the more likely newer ideas that can be tested will come to light. This is one reason I find it frustrating that, for example, rheumatology is now distancing itself from diagnosis and care of FMS patients. They are now diagnosed in NHS by senior physios. If there is little or no medical interaction or interest, how is anyone going to figure out how to understand and solve a medical problem like FMS? Or ME. Similar diagnosis and medical discharge from NHS for pwME. No follow up, no development, no engagement. How does this change? I suspect with biomarker and/or credible, useful treatment. But how does the medical professional get to this point if it is largely disinterested? How can this change?
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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?
 
MrMagoo said:
Sarah Boothby is questioning Beth Thompson, Dietician

S- Delay of 5 days admission (in June) BT- awaiting Consultant agreement on pathway

S- What is ME Crash? BT-for Maeve it was heart rate, palpitations, extreme exhaustion, couldn’t open eyes but knew she was there
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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 ?
 
MrMagoo said:
Sarah Boothby refers to BT’s ward notes 9 July in her questioning

“Maeve wiped out after obs (observations)”
“We need to treat Maeve, not the ME”
“I do think we need to change their expectations”

View attachment 22640
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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?
 
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