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

I haven't looked recently but they are well known to be wolfs in sheep's clothing. You have to look deeply into how they use their words/phrases and what they mean, as many will tell you.

I think the bigger problem is BACME and their roll out by the NHS, along with FND clinics which seem to be in every hospital and pain clinics. Both have a determined hold on ME supported by the board of the NHS England. I have made a few slides about this and how this all impacts on the care of those with ME. I have pout them on X and am happy to share, but it is too much to put on here I think.

In general terms the health and care of young people with ME is declining and the outcome for them is scary.

 

Spot on, it is all in the words they use and how they then use the meaning. I think @Jonathan Edwards is right "Multi disciplinary" and "complex multi system disease (or anything like those words) can mean complex mental health only or FND in other words. It is something I am thinking about a lot; how normal words like "functional" can end up meaning "conversion" without the understanding of healthcare providers and commissioners.

 

This is an important issue. The mismatch between what is actually known about our condition and what the majority of professionals in the UK supposedly supporting us believe, and the bizarre language games they play to maintain their unevidenced beliefs.

You could put the slides on the BACME thread or if you thought they would form the basis of a useful discussion start a separate thread just for them.

 

Leopard.... Spots ....

 

NHS Devon has published its protocol for severe ME patients: https://www.royaldevon.nhs.uk/media...-me-patients-clinical-guidance-v1-0-b-007.pdf

 

I've created a new thread for the document, UK: Royal Devon University Healthcare Trust: Planned and unplanned admission process for severe or very severe adult ME patients - clinical guidance

 

Sounds good - if all the staff involved are aware of how ME presents and have adequate training.

 

https://virology.ws/2024/12/11/trai...to-coroners-report-in-boothby-oneill-inquest/

 

REGULATION 28 REPORT TO PREVENT FUTURE DEATHS THIS REPORT IS BEING SENT TO:

1. Andrew Gwynne / Wes Streeting Department of Health and Social care
2. NHS England
3. NICE
4. Medical Research Council
5. National Institute for Health care and Research
6. Medical Schools Council

I wonder if all these bodies have responded eg the Medical Schools Council needs to ensure that training is brought up to date. Do we know anything about this?

 

It's titled 'Trail by Error'!

 

They are under no obligation to reply

 

Not sure where to put this, but the question and answer in parliament was about a final delivery plan for ME due to be delivered in March 2025.

we’ve always heard of an interim delivery plan. Do we think this is a simple error or is the plan now going to be final and complete?

Attached screenshot of Andrew Gwynn MP stating final delivery plan in March 2025

 

I am expecting a final delivery plan by March. I doubt there will be any substance to it though. During the consultation process there was no recognition of any need for any change in approach to care.

 

They all seem to have except for NIHR.

 

Deckchairs .. titanic

 

Fixed!!

 

Actually, they are under an obligation to issue a response to the coroner. They're just not under an obligation to take any meaningful action; they could also take some action that was less than meaningful, or explain why they thought no action was necessary.

A huge problem with the PFD system.

 

Ah yes! They are under no obligation to act. They can reply to say we’re taking no action. I stand corrected.