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

In these modern times, you shouldn’t have to consider sending a patient with VS ME over 200 miles to Leeds for a bed. You should be able to have a bed at the nearest hospital which is suitable, with appropriately trained staff and protocols. The leading consultant can be based anywhere, or be peripatetic. We’ve got the internet, the NHS app, virtual appointments.

 

I thought I had previously read the Leeds inpatient service had shut, however it seems that it is still there (see https://www.leedsandyorkpft.nhs.uk/...npatient-centre-psychological-medicine-nicpm/ ) though the webpage has not been updated since 28/12/22.

It’s title ‘the National Inpatient Centre for Psychological Medicine’ does not inspire confidence

However even if they were able to manage severe feeding issues Leeds would not be a practical destination for someone with very severe ME from Devon.

Added - Their Service Information leaflet does not inspire confidence given one of the highlighted treatments is “graded activity programmes particularly in relation to fatigue” see https://www.leedsandyorkpft.nhs.uk/...Service-Information-Leaflet-December-2017.pdf . Should we have a specific thread on this Service?

 

https://www.thetimes.com/article/9c...b?shareToken=c0f3f33e973e5fc0db81e3ee4500844d

The times (no paywall)

 

It’s closed to new referrals from outside Leeds since 2022 click the link on that page “for referring clinicians”
presumably it was closed earlier as Dr B? Contacted them and they said they’re not accepting patients. The classic phrase ”we’re not commissioned”

 

Does anyone know if saline IV was tried to see if it helped? Because even if it helped for half an hour then maybe it would’ve allowed Maeve sit up to be fed – that could’ve made a crucial difference given she died due to malnutrition.

I won’t pretend to understand the complexities of IV saline but I’d like to try and understand why some doctors believe it can help and others don’t, because there’s conflicting information.

Some POTS specialists seem to feel saline IV considerably helps their patients and there are patient experiences to the same effect (examples in links below) but @Jonathan Edwards it seemed that you disagreed and thought anything past half an hour wouldn’t have any effect (think I interpreted that right but please correct me if not?!) As someone who has POTS and wants to understand what feels like a crucial question regarding Maeve’s care, please could you (or anyone else) help me try to understand why there are differing opinions and experiences? Thanks!

https://drsanjayguptacardiologist.c...transformative-treatment-for-pots-long-covid/

https://drsanjayguptacardiologist.com/patient-stories/my-experience-of-pots-iv-fluids/

Also, it occurred to me that research into saline IVs specifically on pwME (or both ME and POTS) is probably scarce and so if there is a circa 20% lower blood volume then how can we know whether we can apply the results of other studies to pwME, especially since no one seems to understand why the low blood volume might occur?

Here’s some research I’ve been able to find via a quick search specifically relating to pwME as well as a study that’s planned but hasn’t yet started that will be interesting too. I haven’t been able to read more than the abstract so perhaps these won’t be helpful here but including in case they’re relevant.

https://pubmed.ncbi.nlm.nih.gov/9292244/

https://pubmed.ncbi.nlm.nih.gov/28185102/

https://www.omfaustralia.ngo/saline... treatment,infusion and a Hartmann's solution.

 

IF it helps for half an hour, providing symptomatic relief for half an hour (and I acknowledge that's an IF), then, is it possible that either the saline OR the assumed-to-b related half hour of relief causes some sort of consequential change, that then helps the person feel more well for the next few days (as subjectively reported and assumed to be a result of the saline, in some anecdotal cases)?

 

Sadly I do not think this is realistic. I am beginning to understand that looking after VS ME/CFS requires a very high level of skill even to do less harm than good. You need staff of high intelligence who have a lot of experience. I suspect that the numbers of people with this problem is tiny in terms of service requirement - maybe ten people in the UK at any one time.

When I was using rituximab for RA we were the only unit in the UK likely to do more good than harm because that also required a very high level of understanding and skill (of a very different sort). The French lost a number of patients because rituximab was rolled out to all hospitals and people did not understand how to use it.

For children there are probably three or four centres at most for severe ME/CFS in England. Probably none of them are ideal but they do understand the complexities and that it takes a lot of experience to learn what needs to be done just to avoid screwing up completely.

 

The simple problem is that we have no reliable evidence of there being benefit. I don't discount the conceivability that there is some ongoing benefit but it is physiologically unlikely and nobody has shown the benefit so far in adequately controlled studies.

'Specialists' in ME/CFS hand out all sorts of treatments claiming they know they work. The BPS hand out GET and CBT saying they know they work. Physicians hand out midodrine, fludriocortisone, IV saline and so on saying they know they work but doctors have been doing that for centuries. When blood letting was abolished doctors were furious because they 'knew it worked'. Both doctors and patients are gullible. We know that. IV saline is the perfect placebo - a dramatic intervention with a 'scientific' rationale. It is bound to make people think they have improved. But before pharmacologists believe anything works the least they ask for is a dose response curve. If something really works there is a dose where nothing happens - much too small - there are doses where you get increasing benefit with giving more, and there is a level above which there is no further good and there may be harm. We have no suggestion of that for IV saline. The chances that people are being given the 'right' dose are zero because nobody has found out what the right dose is.

It is all make believe and medicine has been built on make believe for centuries. What changed in 1970, more or less, is that medicine suddenly became more than make believe. But the doctors who made a living out of make believe have never quite got to handle that. I don't deny that IV saline might do some good but it has all the hallmarks of a placebo effect. The placebo effect is the reason why we have trials costing 10 million dollars rather than half a million. It is that important.

 

Very distressing at the Inquest now. Mrs Boothby very upset. Trying to question witness on why she wasn't helped when she asked for help from the District Nurse. Ms Jenkins.

'Why is the risk of not being able to receive hydration at home never recorded by the district nurse?'

'The Community Dietitian would have this'. 'Outside of their scope of practise'

 

If the idea is that this is a disordered signalling loop then yes that certainly makes sense. You might nudge the loop back into an upward spiral. But almost certainly you could get the same with drinking a cup of soup. Of course if drinking is impossible that is no good but I think there are two different problems here. One is inability to take anything by mouth, the other is putative low blood volume from some abnormal regulation.

 

I don’t have words.

Sarah & Sean have the words, their evidence statements, utterly devastating.

This journalist has the words for their write up. Some hard hitting journalistic work. This maybe the best public comment on ME anywhere.

In honour of Maeve.
The writer.

 

And resources. I'm struggling to get past that phrase "nursing burden" in relation to TPN. Nobody would use it about an ICU patient; it's just accepted that staff-to-patient ratios are high because they need to be.

But people like Maeve are as much at risk as ICU patients. They might need a different environment, but if pump feeding has to trialled because bolus isn't tolerable, that's what should happen. If it means continuous observation is necessary, it should be put in place.

If she'd broken her neck trying a bit of cliff diving when she was off her trolley on cider, would anybody be talking about "burden"?

 

If it was cider yes the Daily Mail certainly would.

If on the other side, it was a splash of vintage Champers or a decent red on the edge, or a mishap with a thoroughbred, or a collision involving an oval ball and a few large men, or something that happens on a army base, no probably not.

 

Hi,
I'm severe (top end) so not following this blow by blow but have read the mainstream media coverage (including the two BPS articles ironically in the left wing media )

I wanted to ask whether you think the coroner is reading between the lines and "getting it", particularly the systemic impact of the psychologisation on delaying the appropriate treatment until too late, or does it seem as if they are swallowing the hospitals story that no one messed up?

I worry the PFD outcome will be nothing more than an soecific advisory to that one hospital to sharpen it's act up, which it says it has already done.

 

I’ve had a look at tweets but won’t be up to doing anything until this evening.
Dr Shenton answers seem a mixed bag…
The district nurse was giving evidence and it seems she called in to check for pressure sores one day, but this evidence involves a lot of Sarah asking (reading into evidence) absolutely desperate phone calls to DCC, Gp, asking for help, asking for bedpans, help with fluid intake and the replies are mainly “that’s not us that’s Dietician/Social Services/need a care assessment “computer says no”

coroner says she has a clear idea of what happened to Maeve.
Interim decision 2pm next Friday, public welcome to attend

Jonathan Helmsley to appear in September for one day.

I think full decision is due late Sept

 

This coroner, like the majority of them, is a barrister. She’s already mentioned something about the legal arguments for Negelct being a test in the legal sense, not the everyday use of the word. So she’s going to look at things form a legalistic viewpoint which makes it hard for us to guess as non-lawyers.

I do think she “gets it” that the situation was catastrophic but I don’t know how much a “take down” of the BPS fits with what she is there to do. I think a public inquiry would be better placed to do that.

 

This might be detailed and impactful.

Maybe we should also prepare ourselves for it being brief, dry, or appearing to communicate too little of the tragedy. It wouldn't necessarily mean that it lacks force, or that what happened to Maeve hasn't been understood, or that there will be no consequences.

 

It seems that there was delay in starting end of life care for Maeve in August/September due to the safeguarding concerns. Dr Shenton wasn’t able to give higher strength pain relief during this delay.