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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...

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...

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...

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...

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...

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...

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...

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...

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...

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...

MEAI: Dr H is thanked by the Coroner & questions from floor will be opened after a break They will pause proceedings til 12:30 **** Thanks very much to all the tweeters

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...

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...

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...

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...

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...