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

ME Advocates Ireland:
Dr H: only a small number of patients with Severe ME , 5 per year, come into RD&E They have 7 patients on their existing records though confined to home Refers to link with LC They expect up to 5 ptnts to require inpatient care

Dr H: refers to who he approached re need for specialist services No intent by ICB to commission No capacity Concerns taken seriously but would require another body Dr Marsh raised concern w Prof S Paris, Med Dir of NHS (gist)
 
Steve Fifield:
Coroner / Dr Anthony Hemsley Coroner not clear who she needs to approach. Believes it needs to be Government. Write to DHSC and NHS England. AH: Include Michael Marsh NHSE SW Region & Steve Moore Devon ICB

Jason S:
The Royal Devon prefers to treat severe/ very severe patients at home. Due to heightened awareness of ME the community matron can now assess deterioration & service provision for dietary interventions.
 
ME Advocates Ireland
Coroner understands that if someone like Maeve needed to see a dietician in own home they would now Dr H: the community matron would be very beneficial now Unfortunately in M’s case the GP was alone but now it would be different (gist)

It seems now that a community matron is available for patients confined to home That matron who ‘hold the ring’ coordinating care would liaise with Hosp based colleagues & assess needs & provide the necessary services & supports in the community (Devon)

Coroner refers to the huge responsibility Dr Shenton had without the role of the community matron now being referred to

Dr H: the community matron is a post holder who is fully equipped to contact all the right services & able to assess earlier the upstream of a crisis & to plan an in harmful admission ie able to divert the patient away from harm
 
MEAI continued:
Dr H: has thought about training to avoid harm Hospitals are complex places now so range of options available eg a ward that is co-owned by a consultant geriatrician is available Geriatrician has a deep understanding of many areas of physical & mental health

Dr H: There is now an e-learning platform available (NHS) of the requirements of ME patients Currently investigating if they can hold similar platform in electronic staff records in Devon that can be audited etc

Dr H: specific local informal training re Severe ME has been made available to staff in Bolum ward There are plans to train others, however it’s a matter for the future as very few people are admitted with the level of severity of this disease

Steve Fifield tweeted:
Coroner / Dr Anthony Hemsley What changes have there been locally (cont)? e-Learning platform is first stage now available. Stage 2&3 still in construction. Similar or same to be held on staff record. Would know that people had completed a course - looking at.
 
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MEAI:
Coroner asks if there is a way that it could be ensured that if someone with a severe ME who accesses care meets hospital staff who can be trained there and then Dr H confirms, says nursing staff in partic need to understand requirements such as communication issues

Coroner understands that at the RD&E everyone will be given an individualised care plan Dr H: this condition is so variable so in order to match an individual’s needs every care plan has to be bespoke Coroner understands that there is no one course for Severe ME

Paul Keeble:
H. Different style of care seems required for severe ME and it's somewhat alien to standard practice.
 
Jason S:
“Because the condition is so variable no admission package has been developed”. This doesn’t make sense. Most very severe ME patients present with the same life-threatening issues ie feeding issues.

MEAI:
Dr H: they were concerned about putting plans into the public domain because of the bespoke nature of care plans which have been outside of standard policy & practice so they bring an element of risk to the individual, create a sense of professional vulnerability

Dr H: describes thy they hve care plans now for those in the hospital & those in the home They are currently supporting a patient at home who has a Peg tube & intravenous access Plan is to mitigate risk & protect caregiver’s & impower family to take on care role
 
Paul Keeble:
C Dr Strain in charge of eLearning. H He is working with NHS England on that package.

Steve Fifield:
Coroner / Dr Anthony Hemsley
What changes have there been locally (cont)?
Dr. Strain working with NHS England on Training Package. e-Learning.

Coroner / Dr Anthony Hemsley What changes have there been locally (cont)? If someone comes into hospital, expectation that people managing patient would have training.
 
Matron for Patient Safety (Hospital role).
Never heard if this before

They also seem to be putting emphasis on Dr Strain 'having an interest in Chronic Fatigue'. Given his research work how feasible is this really. Did he just step up because he was contacted. They made it sound like a formal thing?
 
MEAI:
Dr H: refers briefly to the meeting Dr Strain attended with Devon ICB around the need for commissioning for Severe ME

Sibylle Dahrendorf:
It really makes me pretty angry that he always talks about chronic fatigue syndrome while the coroner talks about M.E. Are they talking about the same disease or two different ones? Basic mistake.

Paul Keeble:
C statement prepared 24 Sep 2024. H. Main points of contact community matron and then matron for safety based in hospital and ward manager. Consultant would also be known so clear contacts and responsibility has been clarified for patients and family.

H. If complications at home and community can resolve, clear line of escalation to matron of safety and they have direct line to medical director and nursing director as they can be complex to resolve.

MEAI:
Dr H: makes brief ref again to Dr Shenton’s difficulties at Maeve’s time Repeats about the new policy, info re patients at home being supported by community nursing team with Matron central to that care Patient remains under the care of GP
 
MEAI:
Dr H: lead clinicians will be able to draw on other services throughout the hospital as required Coroner refers to someone during the inquest saying they were not aware of Dr Strains role, wants to be sure that staff will have access to info in future

Dr H says that the experience is different now, that leads & key points of contact can be identified now as well as the Matron. He says this is quite secure.

Jason S:
The coroner is concerned that these plans/ideas from Dr Hemsley are not currently policy

Paul Keeble:
C Knowledge and eLearning and 3 modules in the end. Released module 1 in May 2024. Rest not finished. H. Were scheduled to finish over summer, no idea when it will now happen.

C. Food fluid chart docs. S raised this. H. Ensuring adequate nutrition and liquid is vital. To ensure nursing staff offered correct foods and fluids and monitor intake there are specific charts for recording of volume and amounts. Regular audits.

MEAI:
Ref now to current feeding policy Dr H summarises the position, ‘ensuring adequate nutrition & hydration is clearly vital It falls to the nursing staff that patients get correct food & fluids, there are specific charts that record vol & amounts Regular audits occur’
 
MEAI:
Dr H: When someone audits that feeding records aren’t filled properly the audit is repeated regularly & training of staff happens If audits find failings then there are improvements made & a cycle of audits He can’t respond re a recent case

Dr Keith Geraghty:
I am listing to the inquest on Maeve's death from ME - it is shocking to hear from Dr Hemsley that there are no national experts in ME/CFS to call upon in hospitals for patients with severe ME. I can only say the reason why, is because ME has been neglected & not taken seriously.

MEAI:
Coroner refers to feeding lying flat & asks if things are different now Dr H: all of these patients are highly complex & multi faceted in requirements, feeding is central issue A precedent has been established

Paul Keeble:
H. At time understood accepting other than standard practice. Then second patient RDE challenged the practice and local policy. Concluded could feed NG but still very low angle 10-20%, 2 pillows tolerated for this individual.
 
Jason S:
All ME patients are complex. Nutrition and feeding is a central issue. Precedent now established but this was novel with Maeve. Now national standards. At the time when Maeve was treated the risk of flat NG was considered dangerous.

MEAI:
NJ tube at low angles was outside gen feeding policy & a risk We challenged national policy to see if we could facilitate We came to conclusion that w right support we could feed at a low angle achieved by enabling person to have 1/2 pillows..a bespoke plan w Dr

H: We don’t proceed lightly with bespoke feeding, it’s very much bespoke Our local policy does not deviate from National policy, it’s exceptions we make involving the patient & family

Paul Keeble:
C can I modify the guidance? H. No. Had to be individualised. C Even for severe ME? H. Can describe potential exceptions and individual adjustments.
C Who would I address thought on these exceptional circumstances? H. Department for health.

MEAI:
Coroner ask if there should be some kind of rider re unusual circumstances considered on the National guidance re feeding Dr H: no, no power to add a rider, suggests sending the query to the DoH
 
A very brief overall impression up to the break

Dr A Helmsley (AH): He is very clear that nowhere in NHS or privately in England are there any commissioned services or beds. This needs tackling at the highest level of NHS and Government. He stated that ‘l don’t believe there are any specialist CFS (clinicians) in the NHS at all.

(He unfortunately always refers to CFS. Whereas the Coroner always refers to ME)

He appears to have proactive in approaching various levels of NHS including Stephen Powis. Coronor is considering writing to DHSC and NHS England.

Devon ICB clear there is no intention to provide any resources for severe ME care.

AH is much vaguer and less fluent when identifying what changes are happening at his local level. AH insists lessons learned. AH keeps referring to the expectation of only 5 pwME per year admissions and the value of directing resources for this small number.

Feeding procedures were discussed and AH identifies this as a key issue that needs addressing higher up. Suggests DHSC.
 
MEAI:
Sarah Boothby asks the coroner why Dr H uses the ‘chronic fatigue syndrome’ label Dr H says it’s the more current term & used with ME on NICE guidance

Paul Keeble:
S. Would it Surprise you that all you have found that this was known in 1993 for ME? None of this is new to S. C is shutting Sarah done again. Can drill down in action points.

MEAI:
Coroner interrupts & asks for the focus to be on her writing a regulation 28 & who it should be addressed to

SB: individual cases make the worst kind of laws You have learned from one case what comes next I suggests that it is the exec board of NHS who needs to get recommendations
 
Paul Keeble:
S. Need for community nursing after discharge. Many don't need tube feeding. Community matron in August was still making safe guarding concerns 3 days before Maeve died. There had been many decisions that matron should have known and they still didn't.

MEAI:
SB refers to post discharge for Maeve where her situation wasn’t sustainable Community Matron was still making safeguarding referrals 3 days before M dies Palliative care should have happened I can’t see how practically things will change re Matron input
SB: one case is not a good basis for creating systemic change How do you expect a community matron to know what to do when they visit a home?

Jason S:
Sarah Boothby- Very severe patients like Maeve had a community matron. She was still making safeguarding decisions. She did not suggest palliative care because she didn’t know what very severe ME looked like.
 
MEAI:
SB refers to Alice Barrett’s presentation Mr H interrupts saying can’t refer to confidential cases

Paul Keeble:
S. Is it really risk free to make recommendations on one case when we know 15% of patients become this severe.

Steve Fifield:
Everything known in 1993 that 15% were expected to become severely ill. Is it safe to make a recommendation based on one patient, or should it go to Secretary of State for joint decision? [Coroner thinking of joint / National level]

MEAI:
SB: asks if it’s risk free to make recommendations based on work done or should it be raised to a strategic National level Coroner confirms that recommendations will be raised to national level (gist)

Jerkie:
Coroner: National level change is in my mind.
 
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