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

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 requirements for severe ME are beyond reasonable for an acute hospital A private side room would be provided with low stimuli, a multi discp team, clinical psychology, allied specialists

 

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

 

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 no reference to inpatient treatment. No acute focus with CBT symptoms relief only.

 

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 Severe ME Refers to funding for Severe ME - no resources to fund a level of service needed

 

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.

 

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.

 

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