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

Has anybody heard what changes were made to the Standard Operating Procedures and how they were made (e.g. in partnership with patients?)

 

There’s procedural issues with taking Dr Weir’s advice. He wasn’t an employee of the trust, or even the NHS. His advice was “considered” but didn’t convince them to deviate from their processes.

The reason the trusts have Standard Operating Procedures etc is a combo of tried and tested research, which therefore protects them legal and indemnifies them against being wrong and or sued.

This is why it comes back to systems and processes rather than individuals. Because whether they think ME is a physical disease or made-up woo woo, they followed their procedures and that’s what has protected them.

It’s not fair, but it’s probably legally sound. I have high hopes for the next hearing, and hope to one day see the Public Inquiry we need.

 

Agree, GPs would happily send everyone to a wellness/CBT list if they could. Got a rash? Go speak to someone about your feelings. Sore knees? Walking fitness group. Menopausal? Mindfulness. Sores weeping pus? Healthy eating app. Axe in your head? Call 111.

 

"Forgotten faces of ME", in the Mirror; a very good piece. Covers Maeve's case & the stories of a number of other pwME including Merryn Crofts, Alice Barrett, Millie McAinsh and Whitney Dafoe; in fact, this is the first time that I've seen a number of cases documented alongside each other in a mainstream media story for quite some time.

https://www.mirror.co.uk/news/health/forgotten-faces-harrowing-inquest-constant-33375968

 

There's something else that I noticed while sitting through the coroner's remarks: she referenced Strain's testimony about Weir being able to trial potential treatments on the basis of "anecdotal" evidence & that he would not have the same freedom in the NHS. She then essentially conflated the inability of the NHS to provide experimental "treatments" with their failure to provide artificial nutrition to someone who desperately needed it.

But they are not the same thing: just because Strain had to go through various procedures and consult with others to arrange for the prescription of supposed treatments (Maeve apparently trialled a number of medications and "supplements", including fludrocortisone, vitamins, L-carnitine and aripiprazole) on an off-label basis - that should not have been conflated in any way with the failure to provide adequate nutritional support in a manner that would have been acceptable to someone with the severe sensory sensitivities & intolerances of very severe ME.

 

I really would like to see a written copy of the ruling and understand better some of the thresholds for a coroner to be able to conclude evidence is sufficient for determining, for example, whether something did or didn't contribute to death. Sean's piece put a positive spin on what the coroner found in terms of moving forward, but is his piece just overlooking the negative aspects?

 

It does seem that the message that people can die from malnutrition from ME should or could have a positive impact on better/earlier treatment in other cases.

 

I feel like a main point in this history is time. We know how ME progresses and so when Maeve went to hospital the first time, she has a problem with eating we would recognise as an emergency, but the NhS doesn’t see it that way. They have a kind of “it’s ok because you can still swallow”.
There was a point, in my estimation it might be around June or July where it was probably past the point of no return, ME would take years to recover from after months of crashing and malnutrition. We know that, they started to realise that, but of course by them it was too late. Apparently all options would have lead to immediate death by sepsis or aspiration, we can’t do anything else for you, apart from section you and have an NG forced upon you (aka torture).

 

I think there’s probably a difference between his personal thoughts and his campaign for change.

 

I wonder if it's worth putting Sean and Sarah in touch with the Good law project given the wider good at stake here.

 

I am not sure why we would credit them with ignorance at first admission, and still credit them with knowledge later.

By their own admission they couldn’t possibly have known one way or the other whether or not survival was possible. Because they don’t know about ME.


She was a young woman with a disease all there training told them was so unserious that it required no medical intervention at all none.

No right up to the end they were insisting she let herself down by eventually discharging herself. Not something that they would have done then or now had they had a revelation on the seriousness of her condition and inadequacies of their treatment of her.

 

I’m sure they’ve had and will have legal counsel.

They may well have interacted with GL already. I’d be surprised if not. I don’t know if GL would be interested in taking on something in this area, would be good if they did one day. I know other people with ME have tried to get assistance from them.

I expect everyone will wait until after this process has concluded to decide if they want to formally challenge it or to move on and campaign in other ways.

 

It's a lot to ask, though, given that they're lost their child in such traumatic circumstances and then had to deal with the inquest. And done so much groundwork before and during the hearing, too.

I hope the pressure comes off them now. They may need time to grieve all over again.

 

All in all, despite the Miller article, the media coverage has been really good compared to what I would have expected. And there’s been so much coverage.

 

@Ash

I thought I'd read that they hadn't. I have just checked and in his article in The Times today, p5, Sean writes that " Maeve's parents were left to, inexpertly, represent themselves." This was after saying that all the professionals had lawyers.

I'm not sure what action if any S and S are intending now. It may be too soon for them to know and depend on the outcome of 27th Sept.

 

Yeah they don’t get legal counsel in an inquest.

I’d assumed that they would have got advice, privately no help from the system, to put together their evidence and decide what they would push with their questions priority wise.

But I don’t know that was pure assumption on my part. Maybe they trusted the system to recognise such a clear case of neglect and didn’t do that, or advise was just too expensive or in accessible in this area. Or maybe they were advised to see how things played out and get advice later only if necessary.