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

MEAI:
Dr H is thanked by the Coroner & questions from floor will be opened after a break They will pause proceedings til 12:30

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Thanks very much to all the tweeters

 

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.

 

Paul Keeble:
S. Is working as a social worker with ME because patients now she knows. Also training other social workers. Extremely hard for social care and nurses to differentiate between patients. No one is talking about PEM.

Jerkie:
S: PEM needs to be dealt with, discussed - it separates ME from CFS.

Jason S:
Sarah is currently talking about me in the nursing home!

Steve Fifield:
Coroner / Sarah Boothby Q&A: Because of Post Exertional Malaise, patient anxious that risk of death from not managing PEM. Plans based on meeting need without understanding PEM. Without a specialist for ME/PEM, psychiatrists need to know how to distinguish.

Paul Keeble:
C doesn't have power to tell department of health to do. All can do is point out the risks.

 

MEAI:
SB: brings up ‘PEM’ W/out specialist provision for ME specifically those patients are at risk of becoming malnourished or suicide. Where there are mental health needs, psych need knowledge C: This cant be sorted at reg level, needs to be at a higher level, national

Paul Keeble:
S eLearning. Nothing in it for severe ME to protect from PEM. How does that help? H. First module of planned series. Doesn't know what the contents will be.

S. Module not responded to anyone who put feedback from severe ME patients

S. Record keeping. In audit done for inquest, was trust aware they were never full staffed? H. Can't comment on nursing staffing levels. Organisation has that information.

 

Jerkie:
S: Was Trust aware when they did the audit that wards were always short of staff? Lack of nurses. H: Don't know, sorry.
SB: highlights the woefully inadequate / slow and cumbersome system to keep records including nutrition requirements, nurses were using pieces of paper. Asks if H is aware of this? H: No. But it's a new system and it takes some learning. Thanks SB for raising.

Paul Keeble:
S. Is trust aware electronic patient record for nutrition etc was so difficult to make individual entries that Nurses scrap paper notes as it took to long on 12 shifts? H. Not aware of that example. Electronic patient record at RDE is relative new, constant learning

 

MEAI:
Sean O N speaks now & asks questions of Dr H What is the most recent comm you have had at national level & are you disappointed w responses Dr H: most recent was with Dr Marsh in Sept He’s not surprised that he’s been required to try different avenues complex matter
SB: do you envisage hospice style care Dr H: see needs to deliver facility to meet the needs of Severe ME not necessarily a hospice

Paul Keeble:
SON Specialist unit maybe hospice? H No preformed ideas. A new facility that meets complex needs and needs we haven't touched on.

 

Jerkie:
H: I've had to try different avenues to initiate movement. (ref to lack of national level contact & engagement) SBO: Are you surprised [by the] lack of engagement from national level? H: I'd rather not answer.

Steve Fifield:
Coroner / Sean O’Neill Q&A: Should Coroner be writing to NICE regarding guidance for severe or very severe. Not much guidance for practitioners? [AH: National body to provide guidance when evidence available. Should be able to state evidence or recommendations]

MEAI:
SB: there’s not much guidance for practitioners in NICE
Coroner agrees
Dr H: NICE is a national body with clear remit for guidance, mandatory in some forms, guidance in others Dept of Health & Social Care would be bodies to go to, don’t dilute

 

MEAI:
Coroner says SO’N has a great deal of influence if he has other suggestions of who to write to He has already suggested the Health sec but she has no power but can bring the concerns raised to the Gov’s attention She could copy in any of the bodies that wud find use

Edit to add: Graphic from a tweet by Sir Dame EleanorF #MEowner
@EleanorSews

 

MEAI:
Mr Launds doesn’t have questions

Coroner says she will write a reg 28 report to the Trust

She says SB is quite right when she says people will move around, move on, that she was expecting a policy doc that would give a pathway if someone came through the door


Jerkie:
SB quite right people move on. Was expecting a pathway for patient for ME. What happens if ppl/staff there now leave RD&E?

 

Paul Keeble:
Trust lawyer. Task to finish community care piece still ongoing. On policy a flow chart. A trust could provide an update in 28 days, not a policy but which post holders are responsible for what.

Lucibee:
Fairly concerning that a senior clinician doesn't know that only NICE Technical Appraisals are mandatory. NICE guidelines are evidence-based recommendations, and as such are not mandatory. They outline best practice.
@NICEComms

MEAI:
Coroner asks if the Trust doc could include something about training, when it takes place & to who
Dr H: the e-learning is not capable of being audited at mo but we can put something in
C gives 56 days for completion of Trust doc

 

Paul Keeble:
Coroner. Intends regulation 28 draft directed to bodies identified and copied to others appropriate. Wil be a doc of public record. Everyone can see it. A long and harrowing process. No one happy or has all the answers. Hopes this report starting a change in this.

Steve Fifield:
Coroner: Hopes that by making report will start a change. Inquest closed.

MEAI:
Coroner says all bodies identified in today’s session will be copied into her regulation 28 report which will be on public record , available for all to see, ‘a report that will start a change in this area’ C thanks everyone who attended Inquest now closed