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

Just to say that I'm not at all well enough today to write the kind of updates that I did yesterday, but I've listened to the entire morning session and Dr Roy's testimony was very illuminating, to say the least. There was no mention of RCP guidelines being a limiting factor; the emphasis re unsuitability of PN related to hygiene, burden for Maeve of additional nursing care & hence the maintenance of sterile conditions.

I've made extensive handwritten notes and, if there is interest, I'll try to put together a post later, or tomorrow, with the kind of details that ordinary journalists will likely omit from their stories.

The hearing is now adjourned until 2:10 when Dr Warren, an endocrinologist, will be giving evidence.

 

From Kags on twitter “Action for ME medical adviser consults with Dr, who comes away thinking they’ve been discussing “theories about ME” and there’s no decisive evidence

Dan Wyke - The Coroner states lack of dietetic (edit spelling) support in NICE guidelines and indicates she will address this

 

Yes please!
There’s a lot of good questions being put to Dr Roy from what people are tweeting, but there’s a lack of response being reported. He’s also being accused of waffling, and seems to be getting peoples backs up so it’s hard to parse what he’s actually saying.

 

https://twitter.com/user/status/1816407751989374997



In an exchange with Dr Shenton,vDr Roy questioned Dr Weir's suggestions for nutritional support. Instead, he recommended "robust psychological support" and said she shouldn't be seen by the gastroenterology unit at the hospital. #MaeveInquest

 

I'm not on Twitter but I think some of the Tweets posted above are muddled. The psychological support statement is taken out of context. The discussion of the lack of NICE guidance regarding nutrition in severe ME - the reference I heard discussed was to the old NICE guideline that was in operation at the time, not the latest guideline.

 

The problem that we have had to face is that NICE have complex requirements for any guideline process such that even a modification seems to require setting things up that would cost a lot of money. A committee has to be convened. Evidence has to be assessed...

Interested parties have been told that NICE is not interested in making modifications.

Having discovered that I finally came to the conclusion that no modifications are needed for the ME/ guideline. Whether modifications are needed for nutritional support guidelines I do not know but my reading of the RCP edvice document is that it is fairly clear that there are no strict rules about what is allowed - rather that each case has to be considered on its own merits.

 

They are at lunch just now, resuming shortly with Dr Warren

 

I’m just highlighting this as it is both moving and important:

“[Sean O’Neill]: I feel I didn’t do everything in my power to help her, do you think the RD&E did everything possible to save Maeve?​

Dr Roy: I do, everyone tried their absolute best, I understand your loss. This was very sad & we tried very hard which was why I remained involved.”
​

I have great respect for Sean for admitting the mistakes he made in being slow to understand that nature of Maeve’s illness (because of what he was being told by doctors). He has become a valuable advocate – and his voice is all the more powerful for his honesty and humility about his journey of understanding. I hope there are doctors who are learning from that.

 

Dr Roderic Warren Endocrinologist -also trained in Diabeties and general & internal medicine
Does not know if there is any specialist training for ME in the NHS

 

Telegraph article (from yesterday) available in full

NHS staff treated woman who died from ME ‘as if she was to blame’ (msn.com)

 

Is there any specialist training?

 

Dr Warren discussing the insertion of NG tube, caused Maeve to deteriorate and she requested removal (date not specified)

 

Maybe 'is there any training?'

Specialist training is training after passing the general College exams for entry into specialities.

There is no specialist training for ME/CFS for adults because ME/CFS does not belong to any specialism (unless the liaison psychiatrists have training!). For children there is specialist training because paediatrics covers all conditions in children and they realise that ME/CFS exists.