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

Amw66 said:
Things may have changed but UCL did not have a good reputation with parents / carers .
@Tilly may have better insight
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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.
 
Tilly said:
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.
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This.

Far as I can tell the same people are still in the driving seat, and their underlying views and therapeutic prescriptions are fundamentally the same as they ever were. The only difference I can see pre- and post-NICE is slight tweaks to their marketing spiel, and sometimes not even that much.
 
Sean said:
This.

Far as I can tell the same people are still in the driving seat, and their underlying views and therapeutic prescriptions are fundamentally the same as they ever were. The only difference I can see pre- and post-NICE is slight tweaks to their marketing spiel, and sometimes not even that much.
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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.
 
Tilly said:
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.
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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.
 
Nice write up thanks Dave.

In its letter, NHS England reported having established “a specific working group to determine if additional support can be provided to commissioners of ME/CFS services,” with the first step being “a stock take of existing CFS/ME services in England.” The use of the term CFS/ME in this context is interesting—a tacit acknowledgement, perhaps, that many local NHS trusts have failed to implement NICE’s 2021 ME/CFS guidelines adequately, if at all.
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There's certainly much to be done there. I wonder who is on that 'specific working group'.
 
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?
 
Binkie4 said:
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?
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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
IMG_3401.jpeg
 
Nightsong said:
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.
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Ah yes! They are under no obligation to act. They can reply to say we’re taking no action. I stand corrected.
 
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