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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...

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...

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...

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...

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...

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...

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...

ME Advocates Ireland tweeted: Dr H: (gist) Something would need to change to accommodate Severe ME at national level Coroner refers to need for a Regional services for Severe ME & Dr H agrees with her Dr H investigated the options for future patients & refers to the limitation of beds for...

Steve Fifield tweeted: Coroner / Dr Anthony Hemsley What was NHS guidance? Symptom relief, non acute basis. Not severe. Energy management, Lifestyle changes. States a range of information on website. Paul Keeble tweeted: H. Guidelines at the time weren't helpful (2007). NHS guidelines makes...

continued Dr H: The consequences were that anyone requiring treatment in Devon they would provide care to there best possible standard With Maeve we worked within our available resource to provide care There are no pathways for severe ME in Royal Devon

MEAdvocates Ireland tweeted Dr H has stated that the Trust is not commissioned to provide treatment for severe & very severe ME at the time despite the older & newer published NICE guidance He says there is c limited guidance as how to care for Severe ME Dr H: The recommended physical...

I'm not particularly surprised that there would be a mild association between joint laxity (even if it is just one set of joints such as knees or ankles that is inflating a Beighton score) and later joint pain. If your ankle joints are wobbly, it's seems to me quite likely that you might get...

Yes, I guess a question is, is the web team generally sloppy, and outdated reviews of all sorts hang around like a bad smell? Or is it just with CFS, and with influential review authors who think there was nothing wrong with their first versions, that old reviews are still so accessible and...