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

I've been weighed (in hospital) sitting down in a chair with weights that could be slid along a bar at the back of the chair. It wasn't anything high tech, and I definitely didn't have to stand.

 

You’d think even a normal hoist could be used. Patient could surely be lifted just for a moment to get a weight, and that could be done at a point where the hoist was being used for another purpose anyway? The excuse of being unable to weigh Maeve because she couldn’t stand, seems particularly feeble.

 

Catheterisation hasn’t been mentioned, there was reference to there being no plan to transfer to commode, and a static commode being provided at home. So, if she was having to get up to toilet, then there’s absolutely no excuse she couldn’t have been weighed then.
Was she on a weigh bed in the eating disorder ward I wonder.

 

Take down of Millers piece by Vlad Vexler on X

https://twitter.com/user/status/1817918848756265304

 

@dave30th Have you considered pitching a comment article to The Observer in response to Miller?

 

Okay, I have sent in four versions of the same letter (of slightly increasing length).

They are all short. They only deal with one aspect of the opinion piece and only briefly.

Hopefully many people will send in letters as it is certainly possible to to come up with something more cutting. I just wanted to ensure that there were short letters available to the letters editor as space can be very tight on letters pages.
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https://www.theguardian.com/info/2022/jul/20/how-to-send-a-letter-to-the-observer

How to send a letter to the Observer
Do you have an opinion on anything you have read in the Observer online or in print? Then send us your letter to be considered for publication

observer.letters@observer.co.uk


Your letter should be no more than 250 words and in the body of the email, not an attachment.

Please write “Letter to the editor” in the subject field.

Please include a reference – either the headline and date, or the web link to an online article that you are writing in response to.

Also, include your name and a full postal address, plus a contact telephone number. These details are for verification purposes; we will only publish your name and location. We do not publish letters where only an email address is supplied.

We publish robust views, but not abuse or personal and derogatory comments.

 

Thanks @Tom Kindlon. I’ve sent a short letter this afternoon too. I only sent one version but it’s written in such a way that they could easily edit it down to a very short letter if needed.

I very seldom have letters published that aren’t edited in some way. In the old days the letters editor would phone to approve edits but that very seldom happens since newspapers have been running on tighter budgets.

 

Also, I think the more letters that go in, the greater the chances that one or more letters will be published. It should show to the letters’ editor the strength of feeling on the topic.

 

Every time I go to the hospital, whether it be in the clinical nutrition or the gastroenterology unit, I am weighed on a weigh-in chair. They don’t seem to be an uncommon medical device.

There was this one stay at the hospital where nurses came to change my mattress from a regular one to an anti-bed sore one and I was held in the air by a hoist while they were doing it. As with a weigh-in chair I imagine that this has to be a common piece of equipment in hospitals.

Like @Jonathan Edwards said, it really seems that the medical staff who supervised Maeve could not be bothered.

 

From my time in hospital (a major hospital in a major Australian city), there were no hoists with the capacity to weigh a patient, and the hoists they did have would put you in an upright seated position with your head unsupported. So I always declined both being weighed (they would have hoisted me onto a seated scale) and being hoisted because, no, I couldn't tolerate supporting my head or sitting up for a moment even with mechanical assistance to get there. I'm assuming Maeve's capacity was similar.

They also were unconcerned when I stopped being able to drink independently and was begging them to get nurses to hydrate and feed me (or more, they saw it as their role to "encourage" me to keep forcing myself to drink), and only gave me an NG tube once I was in a coma. But they never required the bed angle that Maeve's doctors insisted on.

This whole thing makes my heart break. How many people does this happen to? How can they possibly keep doing this? I can't fight a hospital in my condition, so nobody there will even have registered that I was mistreated for a year.

 

There are obviously solutions to these so-called problems the Drs encountered.

For me, the worst part is I’ve formed an opinion that Maeve probably would have wanted to be weighed. I’m sure she would have endured the problems it would have caused her.
She endured the “sit up a bit longer each day” she endured having a NG tube put in and attempted feeds. That’s what makes me so angry, I bet they didn’t even offer a weigh chair, a hoist, even to try to stand on a set of bathroom scales. I bet they didn’t even discuss it with her.

 

I was in the same position and was able to be weighed. The hoist itself was able to weigh me. And a nurse helped to support my head.

When I got a bit better, they did use the hoist to lower me onto a weighing chair. But my experience shows it is possible to do it without a weighing chair if they have the right equipment (or they could’ve even attempted to order the equipment).

I was in a university hospital, and I think the royal Devon & Exeter was also a university hospital.

 

[I’m re-posting my post with a new picture, as I think the old picture showed just a hoist but I was trying to show the hoist scales!]

I’ve been following this thread for the last few days. Horrified doesn’t even go partway to explain how I’m feeling. But I just wanted to say this for now:

When I was at my most ill, I couldn’t stand, or use my legs or even arms in any way, so wasn’t able to transfer to a weighing chair. But I needed to be weighed. I was lifted up from my bed in a hoist, and that weighed me - the scales itself were attached to the hoist. I was able to do this even with my sensory issues, and it only takes a very short time (with the help of 2 nurses rolling me).

It looked a bit like this, although I think a different brand, except I wasn’t able to sit as straight upright as this, and my head was supported by a nurse.



I find it very hard to believe they couldn’t do something like this? Yes it does have a sensory effect on a person, but the alternative is not to be weighed at all. I think it also may possibly have been tolerable for a very short time. Did they actually try or ask Maeve about it? https://www.solentscales.co.uk/blog/how-to-use-hoist-scales/

Secondly, I recognise the insistence about upright feeding too. When I was in hospital and had an NG tube (on a few separate occasions over a few months), they too were insistent I had to sit up to 45 degrees or even more. They wouldn’t take no for an answer. So what I would do is sit up temporarily (on the profiling bed) while the nurse was there, then as soon as they went, put my bed back down. Then when I heard the door opening, I’d put the bed back up. Of course I got caught quite a few times, I endured their telling off, and did the same thing again. It was very, very difficult even then, and I tried telling them I was losing so much energy, but they didn’t care or understand.

The point is - I had no ill effects from lying flat when I was on the feed. Sometimes I’d have my bed down completely for longer stretches of time (during the night), and nothing happened. This was for weeks at a time.

The impression I got is that the 45 degree thing is a “protocol” they felt they HAD to follow and they felt they couldn’t deviate from that, and whatever I said fell on deaf ears. I don’t know why this is. But it would be good to find out what evidence this is based on?

Thirdly, I also got given all this spiel about how if you don’t use your stomach muscles, they stop working (atrophy). I also got told the same thing for my bladder. I was at a different hospital to Maeve so I think this is something that a lot of doctors here in the UK must think.

At one point I was losing weight & vomiting constantly (including water), for days on end (when I didn’t have the NG in) - and there was no fluids given to me. The dietician wanted to help (by trying an NJ tube instead of NG) but the doctors did not. They said they didn’t want me to have another tube in because my stomach muscles would “forget” how to work.

They also seem to feel this way about other organs eg bladder. They took my catheter out too early. My legs were still paralysed, my arms were only about 10% moving, I couldn’t roll over, and they decided it would be fine to remove my catheter. I told them to please put it back in as I don’t have energy to roll over & get on (or someone else to help me get on) the bedpan, how movement was so hard, and they said to me - “if you keep a catheter in too long, your bladder “forgets” how to work and the muscles stop working”. They told me I would only need a catheter for “comfort purposes” at that point. I was only asking for it to be kept in for a couple more weeks.

So, in my experience doctors have some strange and very fixed ideas around this - around our muscles in our stomach (and other organs) “forgetting” to work. I don’t know why they all think this? But it is a problem in the UK that should be addressed.

 

It is. I don't know how/what would be allowed by any paper, but I feel so enraged by it that I feel it needs an article on its own from the parents directed straight at Miller and his use of the photo. Something that shows him up and speaks directly to him (and others) as a wake-up call of 'look at what you are doing with this'.

Something along the lines of reminding the public and medics that what Miller is actually pushing is 'a product'. And that he's effectively using her photo in an article that is an attempt at an advertorial. And whether there is any other product or service in the world that would get away with nevermind be bold or in denial enough to use the imagery of someone harmed by and who did not (after having tried it and felt its impact) 'believe in' or 'advocate usage of' that product at all.

So only in this niche of healthcare?

And that he is now, whilst an inquest is ongoing, actually daring to use the photo of someone who has died due to the misunderstanding and mistreatment of the condition that paradigm sold as a sales pitch. Claiming to be so sure what he sells 'would help' just whilst the point of an inquest is that it is supposed to be asking questions of these people to find out 'what it actually did'.

And then request that he doesn't use said photo.

Of course I don't know about relationships with different newspapers and why Guardian/Observer chose to print the article etc (for all we know it could be important to show how 'open-eared' the 'other side' is to feedback on whether their treatment works or harms), and understand there are probably thousands of complexities to consider that I haven't.

 

Surely if you don’t use your muscles, they become *deconditioned and all you need to do is GET with CBT and they’re back to normal?

edit-spelling

 

It looks from that study that there some changes but nothing major. If you stop using your hands the skin gets thinner by more than that I suspect but it isn't a problem, just a normal regression.

I am not sure what the sepsis argument is about though.