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

Actually they don't and it isn't in UK hospitals in this century. A member of my family who had a stroke had to listen all night to nurses ten feet away laughing about their relationships without any concern about patients being present. Things were very different forty years ago.

 

The coroner has asked Sarah to move on, as this line of questioning isn’t helpful.

In my opinion, Sarah is trying to draw out what she knows is there, they didn’t help her or Maeve and she knows the subject too well to do it objectively, I’ve seen this many times before, I really feel for her.

 

SB is upset because she wanted to preempt the outcome Maeve saw in March

She asks SJC if there’s any other route the family could have taken

 

SB- When Maeve died did DCC make a referral made to the Safeguarding Adults board?*
SJC - I’m not aware if that took place
Coroner - if it was, I’d have a record of it




*I think whers there’s concerns and Social Services involved, then the person died, this would normally be referred to Adult Safeguarding Board because a review/investigation may be needed to avoid similar happening, learn any lessons or amend practices.

 

A “Ms Allan” has spoken a few times (interrupted) and my guess is she is the DCC rep/lawyer

Sean O’Neill now questions SJC

No references to MBP/FIDA/prior to 10 September 21, made by a Tim Jackson (don’t know him?)

 

It’s finished for the day. Tomorrow will be Sarah Boothby followed by Sean O’Neill. There may be more from Dr Shenton. Friday morning we have a witness ( will it be JH? Helmsley) Friday afternoon will be legal submissions.




edit - apparently Kate Dixon on Fri

 

1. They don’t normally contact you. You need to check the website on Sunday morning to see if it’s been published or not.

2. They probably won’t finalise letters for the Observer until Thursday, so you could send an amended version of your letter today.

 

Further to this

SJC responds to Sarah that raising concerns about a person not eating or drinking is looked at under the category of abuse

 

Dr Helmsley attending tomorrow but not answering questions? Looks like scheduling issues.

 

With thanks to tweeters especially ME Advocates Ireland and Paul R Keeble

 

And special thanks to @MrMagoo too.

 

Yes, it's great for those of us who can't see posts on X.

Big thanks to @Nightsong too.

 

such a good analogy Bobbler

AMEN! 'tired'....it is grotesque word to use imho

I saw a dr on reddit say something like 'when i tell myself i'm f'ing tired, it becomes a self fulfilling prophecy'

Its just almost impossible when this is what they think, to get anywhere. And why wouldnt they think it? This is what they're taught, what gets repeated over & over.
I'm not tired, i'm ill

oh thank you, just thank you a 1000 times thank you, for getting it

No, ime drs are entirely unable to hear things they are not expecting to hear. It doesnt matter what you say or how you explain it, or how much they seem to be listening. The words somehow get filtered and twisted into something they're familiar with, something they're expecting. Its like in their minds there are 500 boxes and everything thats said gets put into one of them. ME needs a new box.

No disrespect to anyone else, but @Jonathan Edwards is the only Dr i have ever come across who can listen without filtering & morphing whats said into something he's expecting to hear. Its a joy to speak to someone with a kind of 'clean slate', who is actively looking for whats actually said rather than simply assuming whats said will be some version of what he already knows!

Not in the UK they dont! Goodness, they are louder than a building site! and the nurses are the loudest ones, they positively shout when talking to you, even on wards full of sick people, even after you tell them you have a splitting headache. I honestly find nurses to be the loudest people of all. It seems to be cultural, they have one volume & its FULL

 

Last year when I was put on a NG tube (again before I was diagnosed with gastroparesis and subsequently given a NJ tube), I looked at the French Society of Clinical Nutrition and Metabolism’s algorithm for weight loss and severe malnourishment, which included paths towards enteral and parenteral feeding. I don’t remember that these options required “non-functioning gut” or another biomedical explanation as an eligibility criterion, only that the previous steps recommended by the algorithm must have failed. Is that not the case in the UK too?

That being said, I didn’t tolerate the NG tube and the doctor in charge of my care refused to put me on a NJ tube even though I explained them that I was struggling to digest the feed. And they were adamant about not putting me on TPN — they told me by my bedside that they would do “everything in their power” against it.

Also, in the preliminary hospital report that they wrote when I was discharged, they diagnosed me with “functional digestive disorder” but when I contacted them a few days later to tell them that I had just done a gastric emptying scintigraphy that objectively confirmed my gastroparesis, this term was suddenly nowhere to be seen in the definitive report…

 

No. The coroner is referring to the parties involved--no one else. It is not a public document.

 

I can remember road signs that said Hospital QUIET. I don't know when they disappeared—probably around the same time the old HALT sign became STOP.

 

A few new comments from Paul R Keeble
“One of my top concerns…is guidance on nutrition around ME is wrong”




and some comment on the “hard to follow” social services DCC questioning by Sarah. It seems there is missing info in the records, 2 phone transcripts and an email, which are referred to in other emails, which Sarah is questioning

 

Paul Keeble’s summaries of todays witnesses
Dr Fox
Did intake assessment found little physiologically wrong other than phosphate, discharged Maeve with supplement drinks to improve intake. Did not think tube appropriate. Some concerning things in record about psychologisation andBPS


Beth Thompson, Dietician

Lots of “Maeve believes…” used same coached answer about what ME is, showed little knowledge of ME, misinterpreted ME signs and discharged Maeve with supplement drinks well below the necessary intake, can’t understand consequences of NG and failure

Sarah Clark (SJC) DCC Safeguarding Managef

Safeguarding in Jan-Mar and September. [safeguarding Maeve from Sarah] Both closed once information gathered. Was meant to speak on JH’s behalf but didn’t know anything about other safeguarding raised by Maeve and Sarah [about safeguarding Maeve from neglect by DCC]