Attend the pre-inquest and inquest hearing of Maeve Boothby O'Neil remotely on Nov 27th, 2023

[Countrygirl]

Case ref 8057264

Dear Friends with M.E, please read this.

'Sarah Boothby, the mother of Maeve Bernadette Boothby O’Neill has been told the date of the next meeting to help arrange an inquest into the death of her daughter due to hospital neglect of Maeve’s very severe ME. It’s taken over 2 years to arrange so far and is still ongoing. An unacceptable wait.

Sarah would really appreciate people attend the meeting virtually so that Devon Coroners realise the case is important and being followed by the ME community. The outcome could affect anyone with ME who becomes severely ill and needs hospital treatment as a Coroner can recommend changes. Please consider attending if you can or sharing this with others who are able to.

‘I called out the bias in the new Coroner, Deborah Archer. She has itemised her recusal for the next Pre Inquest Review Hearing (PIRH) 10-12 (GMT) 27 November.’

Anyone can attend remotely, on MS Teams, by asking for a link

email: coroner@devon.gov.uk

Case ref 8057264

Maeve Bernadette Boothby O'Neill

If you are then asked for your relationship to Maeve it’s best to explain you have the same condition as Maeve. Therefore you are also at risk of death if you were put in the same situation Maeve was and have a personal interest in the outcome.'

I do not know if this applies to those outside the UK as well.

 

[hapl808]

This is great. Hopefully someone can bump this when it gets closer to the date, otherwise I'll surely forget. I guess we could email for a link earlier.

 

[Countrygirl]

This is great. Hopefully someone can bump this when it gets closer to the date, otherwise I'll surely forget. I guess we could email for a link earlier.

I should email now, @hapl808.

 

[John Lobb]

I have emailed and am now waiting for a reply. If you need more information about the hearing on the 27th of November please see this link: https://www.exgdcoroner.org.uk/hearings/maeve-bernadette-boothby-oneill-inquest-no-jury/

 

[Countrygirl]

Bump

 

[Countrygirl]

I attended the pre-inquest today in person with Alice Barrett's father and as many as 93 people joined online.

A young journalist sat behind me and he has just published this in The Times tonight.

This was written by the young man who sat behind me in the court today.
https://www.thetimes.co.uk/article/...mQmIazpLzglXkFybIQih1UHLsEao4e_8ZoY6TBEI_iD3w

HEALTH

Hospitals have no services for most severe ME cases, coroner told​

Times journalist seeks answers after death of daughter aged 27

new Will Humphries, Southwest Correspondent Monday November 27 2023, 6.15pm,

The Times Health Law NHS The Times journalist Sean O’Neill with his daughter Maeve Boothby-O’Neill The Times journalist Sean O’Neill with his daughter Maeve Boothby-O’Neill SEAN O’NEILL

The NHS’s inability to care for seriously ill patients with severe cases of the debilitating disease ME requires urgent attention, a hospital chief has told an inquest. Dr Anthony Hemsley, medical director of the Royal Devon & Exeter hospital, revealed in written evidence there was no NHS guidance to staff and no specialist services anywhere in the country to handle acute ME cases. Hemsley said the “gap in service” needed to be rectified and “action is required at the highest level.” Maeve Boothby-O’Neill, the daughter of the Times journalist Sean O’Neill, died two years ago after becoming bedbound and finding the simple act of chewing exhausting. She had three admissions to the Royal Devon & Exeter Hospital before her death and an inquest will be held to examine some of its clinical decisions, including the alleged refusal to offer procedures that might have saved her life.
Before her death at home, aged 27, Boothby-O’Neill refused a fourth admission to hospital after feeling clinicians were not helping her and her symptoms were only getting worse under their watch. O’Neill, speaking at a pre-inquest review hearing, told Exeter coroner’s court that Anthony Hemsley, the medical director of the NHS trust, said in a recent statement that “for patients with severe [or] very severe ME there are no commissioned specialist inpatient services both regionally and nationally”. In a statement to the coroner’s court, which has not yet been made public, Hemsley said: “This gap in service has also been confirmed by the local integrated care board [responsible for planning and funding most NHS services in an area]. In order to rectify this situation, action is required at the highest level.” O’Neill told the coroner’s court: “When Maeve concluded that the hospital was unable and indeed unwilling to provide the treatment she needed, she was right. SPONSORED “Imagine that this was a different illness. Imagine a hospital saying that it was not commissioned and therefore not resourced to provide inpatient treatment to those with severe cancer, those with severe heart conditions, those with another severe disease. It is quite impossible to conceive.” Boothby-O’Neill’s condition deteriorated sharply in the last seven months of her life. Her GP reported her death to the local coroner, saying she was doing so because of the complexity of the case. The GP, who was committed to her care, wrote: “Several doctors involved in her care stated they do not believe ME is a medical problem.” It is estimated that about 250,000 people in the UK have ME and a quarter of those are bedbound or housebound for long periods with severe symptoms.

Campaigners have fought to correct a misconception that ME, also known as chronic fatigue syndrome, is a psychological or behavioural illness but its causes and the best treatments remain poorly understood. Patients have fluctuating symptoms, including prolonged fatigue, dizziness, muscle pain, gastrointestinal problems and brain fog. In severe cases they need to be tube-fed. Boothby-O’Neill’s family want Deborah Archer, assistant coroner for Plymouth, Torbay and South Devon, to hold an Article 2 inquest to consider whether systemic or policy based failures could have caused her death. Article 2 of the European Convention on Human Rights protects people’s “right to life”. ...............................

 

[BrightCandle]

I was there virtually today as well.

I felt like there were quite a lot of problems with the coroner receiving documents and statements from all medical staff involved. This was just a bit of a mess where things seemed to be missing.

The main argument in the pre inquest was about whether it should be dealt with under Article 2, whether Maeve died while the state had duty of care. I think Sean O'Neill and Sarah Boothby made good arguments to why it might. While I think the Trust lawyer showed why it probably doesn't I disagree with his assessment that the Trust did offer real medical care, and indeed many statements from other doctors say they did not. So my hope is that it will be considered but I don't think its necessarily a critical piece.

One thing I do think here is that one of the trusts main defence points is that they followed the guidance. This is where I think article 2 really comes into the argument, we are clearly talking about a systemic failure where doctors can refuse to believe in ME/CFS and have guidance to leave patients to die in circumstances they are actually saveable. But I can see the problem of Article 2 because it implies the department for health is responsible for that environment and that means most of the parties that need to be in the inquest are not there.

I wish Sarah hadn't been concerned about bias at that point as mostly I feel the Coroner was on the families side most of the hearing.

I learnt a lot today about the challenges we face in the UK and we likely need to start pushing for a public inquiry into the handling of ME/CFS patients generally. Many have died unnecessarily and left where part of their condition and symptoms were treatable if the department for health would publish accurate information on the disease.

 

[Countrygirl]

There is another pre-inquest meeting on Friday 2nd February from 1pm to 3pm UK time. Please contact Exeter Cornoer's Office if you want to attend remotely.
https://www.exgdcoroner.org.uk/hearings/maeve-bernadette-boothby-oneill-inquest-no-jury/