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

Unfortunately in the UK 90% of patients are still getting bilateral ECT for reasons that are unclear to me. This is not the case in many other countries. I'm guessing it's because no ECT research is being done in the UK and none of the work done abroad has penetrated NHS practice because NHS consultants don't read anything and if they do they dismiss "foreign" things.

 

Because when they get better they might realise they have memory loss and sue the consultant saying they were too sick to understand what they were agreeing to.

 

The primary professional duty of every lawyer remains the same, @Jonathan Edwards and that it to represent the interests of your client, as instructed, even if those are personally distasteful.

Lawyers also have an overriding duty to the court to act professionally and to assist the court at all times. Finally, there is the ultimate personal duty to act with honesty and integrity.

It can be a difficult balancing act but one which is undertaken by every lawyer on a regular basis.

While the duty remains the same, the environment may vary. The tone of proceedings is very different as between different types of court - criminal, civil, tribunals, inquiries, inquests - each has its own purpose. The tone and atmosphere is set largely by the judicial/quasi-judicial person in charge.

Some proceedings are primarily adversarial, others are investigatory. The focus may vary but the duties remain the same.

An inquest is a collaborative exercise but is still required to establish facts. This necessitates testing the evidence in cross-examination. Personally, I wasn't keen on the style of counsel for the RD&E but there was nothing inappropriate about it. Had there been, the coroner would have stopped it immediately.

It is quite right to say that, historically, there are many examples where lawyers have failed horribly in carrying out their duties, often with catastrophic consequences.

Doctors are required to treat "without fear or favour". If doctors are asked to save the life of a mass murderer do they refuse?

********************

FYI: I was called to the Bar of England and Wales in 1987. I practised as a barrister in different areas of law until 2000 (when I became too ill to continue). I still retain my membership of the Bar Council (the Bar professional body) and I keep up to date with developments.

For the last ten years, I have been a Visiting Scholar at Queen Mary University of London at their Centre for Commercial Law Studies.

My husband is a retired judge who sat in several different jurisdictions. His work involved frequent professional and moral dilemmas (as is the case for all members of the profession) which we discussed in depth on a regular basis. Examining such challenges is often painful but is essential in maintaining personal and professional integrity.

 

Though they could surely still sue if the decision was made by others through sectioning? Or is that easier to defend in court?

 

To me that sums it up. It was ultimately inappropriate because it did not appear to show integrity. Dr Weir's credibility was being undermined in a way that might have been in the hospital's interest but not in the interest of a fact finding inquest. It looks very much as if some of the questions were based on a misreading of guidance that was only in the interest of the hospital to spin.

I have been on the receiving end in a court of law enough times to know how these things work.

 

We do have conflicts to deal with but surely that example is entirely non sequitur?

The doctor does not take the key from the sleeping guard and unlock the murderer's handcuffs for him.

 

Thank you & interesting - so there is a dataset i.e. derived from other illnesses. As you say - data seems to support better outcomes (tube feeding via tube without elevation) versus certain death from starvation - that seems to be a basis to develop a [NICE] policy supporting tube feeding in these specific circumstances?

 

I would think it would be reasonably straightforward to modify an existing guideline - perhaps from another disease rather than general purpose - and cover off the specific features relevant to very severe ME/CFS.

It's probably not that much, principally stick with an escalator from nutritional modification -> NGT -> NJT -> PEG -> GJT -> PN -> TPN. But then make it clear that the risk of death from starvation outweighs the risk of death from aspiration, noting that the patient will usually have competent gag/cough and can protect their airway better than eg post-stroke or neurodevelopmental impairment. I don't know about the idea of an IV fluid bolus to temporarily overcome OI so that the patient can elevate their head even 20-30°, but one could trial this if IV access allowed.

I think if this were instituted we might even prevent any further loss of life directly from starvation itself. There were people commenting in the reddit thread posted earlier writing that they had been in this situation with VS ME/CFS and TPN-dependent and recovered to be able to eat normally (and post on Reddit).

 

Bobs experience?
https://www.s4me.info/threads/bob.1068/page-2#post-41205

 

not all of it

 

I recall the image of a Pilipino nurse offering a surgeon a tracheostomy tube as a patient was dying on the operating table - had the surgeon carried out the tracheotomy then the patient would have survived*. OK this Doctor is giving evidence to an inquest but it seems the shutters are down.
Seems Maeve may have died because the-

1. system was based on other circumstances; and
2. Doctors didn't feel enabled to ignore the RCP guidelines i.e. -

• either tube feed (while lying flat) or give give nutrition by another means; and
• report the deviation, from the RCP guidelines, to the RCP, i.e. to identify that they were unfit for these circumstances.

As others have said - the inquest should focus on how the system failed and what is required to avoid that happening in the future.

*I'd recommend this i.e. to provide insight into the system.

Why Do Doctors Fail?
The Reith LecturesDr Atul Gawande
https://www.bbc.co.uk/programmes/b04bsgvm

 

It got locked just after that comment!

 

Not much on X twitter about Dr Roy.
Sean O’Neill is questioning him. He says they “tried to be creative”

 

Dr Roy questioned Dr Weirs advice for nutrition in an exchange with Dr Shenton - instead wanted psychological support for Maeve, she shouldn’t be seen by gastro

 

Thank you for this - I think it's important i.e. since it moves things on from unacceptable outcome towards a more acceptable/better outcome -- it shows an improvement (on the status quo) is possible +++.

 

So there has been a fair bit of activity with Dr Roy it will take some time to put the tweets together. Suffice to say, he’s not coming across as someone who understands ME.
He has also mispronounced Maeve’s name on at least two occasions.

 

Similarly titled item from BBC website - sorry if it's already been shared - I can't keep up!

https://www.bbc.co.uk/news/articles/cp38pkvknelo

Extract:

"Dr Willy Weir, a retired NHS consultant and expert in ME, said he had urged bosses at the Royal Devon and Exeter Hospital to readmit Maeve Boothby-O’Neill for life-saving treatment.

The 27-year-old died at home in Exeter in October 2021 having had the illness since the age of 13.

The retired consultant told the hearing in Exeter that he had written to the chief executive of the hospital on 9 September expressing his concerns about her case and the “outdated” views some doctors held about ME.

'Seriously damaging effect'

He wrote: "Consequently, patients with this condition have frequently been regarded as perversely inactive without any regard for the possibility that their inactivity is not due to deliberately perverse behaviour.

"This can lead to completely inappropriate management of someone genuinely severely affected by a condition with demonstrable organic pathology."

 

My understanding is that lawyers have a professional and legal duty to not mislead the court or others, which overrides their duty to their client. Is that correct?

I assume there are times when a lawyer may cross-examine a witness with a question to which the lawyer knows the correct or optimal answer (which [would] lead to the truth) but hopes that the witness may be caught out and not be able to answer correctly or optimally, which may benefit the lawyer’s client at the expense truth.

In such circumstances, does the lawyer have any legal or professional duty to provide the coroner with any information they have which would lead to the truth, even if it disadvantages their client?

In this regard, is there any difference in the duties of a lawyer acting in an inquisitorial inquest as opposed to an adversarial trial?

[Edit: wording in square bracket]

 

Dan Wyke on twitter “Dr Roy’s argument seems peculiar - we couldn’t give a dying person TPN because it’s dangerous” (Dan’s paraphrasing)
Sarah Boothby is questioning Dr Roy about contingency if the NG failed

 

Questioning of Dr Roy by Sean O’Neill
He asks about the changes at RD&E for patients with SVS ME. dr Roy says he no longer works at RD&E….everyone did their absolute best for Maeve