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

Golly, UK psych units sound quite different to NZ ones. Mental health nurses don't barge into people's rooms. Units are run much the same as medical wards but the patients are ambulatory. They do wake clients up to eat meals etc. otherwise they wouldn't get fed. But they can refuse a meal and go back to sleep if they want. Clients are encouraged to join some of the cultural and social activities but they are allowed to refuse and stay in the rooms or walk around the ward, socialising with the other clients, if they want, or sitting in the adjourning open space/garden. The many nurses I worked with were friendly but not over the top with it. The assigned nurse will probably have one conversation with a client during the day to do a mental state examination or offer support to the client whenever it is requested. Nurses are also obliged to keep observations on people with moderate to high risk of self harm etc. this does involve sighting the client depending on the level of obs indicated by the inpatient psychiatrist/registrar. Many clients are allowed leave to see to personal business or visit family.

Mental Health Units can be busy places with lots of different professional groups coming in to assess clients to prepare them for community care and family/friends can visit whenever they like during the day and at weekends. Therapy is not usually given on an inpatient unit as people are not well enough to have it. Wards are primarily for safety and containment, the administration of medication until levels of risks lower and they can be safely discharged into community care. Often nursing staff are busy trying to de-escalate patients who are have mania and acute psychosis.

There is usually a ward round throughout the day with the registrar and consultant doing mental status examinations, monitoring progress and adjusting medication, meeting with family and cultural advisors. It probably sounds strange but on the whole they can be quite friendly and quiet places.

However, sometimes they are unpredictable, where any raised voices usually sends staff swiftly walking (or running) to assess the situation and getting prepared to intervene with a variety of measures. Usually the most acutely unwell are nursed away from the main psychiatric ward in PICU (psychiatric intensive care unit) which has one to one nursing, a private high fenced courtyard, a lounge, a de-escalation area, three to four bedrooms and a couple of seclusion rooms with staff in a central pod doing continuous observations and control access into the area which is locked.

Medical Care is on tap. The admitting psychiatrist/psychiatric registrar takes a medical history and usually also has the medical history from the GP referral letter or the Electronic Health Record. The house surgeon is responsible for doing admitting physical examinations, full blood screening, ECG's and any additional tests needed. They deal with any medical concern that comes up for clients as they are under our care not their GP's. They inform the registrar/consultant of any concerning medical problems and discussions take place around the impact of the medical condition and any medication on the psychiatric presentation and the psychiatric medication on the medical condition. If the team are concerned with their limitation of knowledge on a particular illness they seek advice from the on-call medical consultant and often arrange for medical reviews on the ward. Out of hours, the psych registrar does this usually by triaging medical concerns with the nurses and prescribing treatment over the phone if appropriate. Often the psych reg is unable to attend as they are in an assessment in the community or in the police cells, and in this case an ambulance is called and the client is taken to A&E to be seen by the medical registrar.

However regardless of this, clients with ME are rarely admitted to a Mental Health Unit, most of our psychiatric care is done in the community, if the person is not a high risk of harm to self or others. We have small community mental health units that are unlocked, that are basically a house like any other house on a street, with peer and community mental health support workers looking after clients in a home like environment with a shared lounge and the clients often cook their meals with the staff. The community mental health nurse visits them daily and communicates with their community psychiatrist their progress, who advises on changes in medication and they see them every 3-5 days depending on their presentation.

Or clients are treated in their homes with one to one psychiatric nursing care and daily visits by the psychiatrist and the GP if required.

 

She was at home when she died. She had been unable to eat or drink.
When they broke down the door with the police to section her two years earlier, she was released after only a few weeks? on a ward, thanks to a tribunal or some kind. Obviously after that experience she crashed and never recovered.

http://www.sophiaandme.org.uk/sophia & m.e. her story.html

 

Mirza case is quite similar to Maeve in that she developed intolerance to eating and drinking and died as a result. The hospital made her worse (psychiatric treatment, no medical feeding support) and she was sectioned under the false assumption that her mother was making her worse due to false illness beliefs by the NHS psychosomatic ideology.

The Wikipedia page links to a New Scientist article which confirms the dehydration caused the kidney failure. Why would ME/CFS cause kidney failure per se? So, this is another ME/CFS death directly caused by NHS psychosomatic/functional disorder ideology.

https://en.wikipedia.org/wiki/Sophia_Mirza

 

I think that is a dodgy generalisation, even if there are some psychiatric nurses like that. In the two units my wife was admitted to none were like that. In the first the nurses seemed just to ignore the patients. In the second they were attentive and helpful. One particular nurse acted with complete understanding and sympathy, despite the fact that my wife was paranoid and irrational.

My experience with other health care episodes, including my brother in law's stroke, is that medical nurses are far worse.

 

I don't think that is actually what happened. I think the medical people were very happy to palm patients off on psychiatrists. The services were never there any way. The BPS (rather than BSP) people made their careers out of selling their wares but only because the physicians wanted to offload - as they still are, judging by the BSG documents.

 

This sectioning is so similar to Bob.

He was terrified of it happening again.

 

Thanks for the link. So, yes, the two cases seem very similar. Death was in essence due to neglect in the sense that feeding support should have been provided and was not. This would have been justified on the basis of a functional disoder ideology that says that people with ME/CFS have neither intestinal failure nor a bona fide psychiatric reason for not eating so should be treated with (non-existent) psychotherapy rather than food and water.

I think it is unfortunate that these deaths are being used as examples of 'deaths due to CFS (or ME)'. The deaths are due to failure of care. Suggesting that they are due to ME/CFS justifies the idea that there is no point in giving care because the person will die of 'the disease' anyway. Whitney Dafoe proves that they don't.

 

Well then someone needs to get the word out that pwME keep dying because they can’t eat or drink, and that is unconscionable

 

In addition to Sofia, Merryn Crofts more recently also died in similar circumstances. Again, I'm surprised no one has mentioned her in all the recent coverage as her story was covered internationally 6 years ago.

eta:

Manchester Evening News: Bedbound and in unimaginable pain, watching my daughter waste away and die from ME was torture | Science for ME (s4me.info)

 

It happens all the time. I well remember a patient of mine with a spinal lymphoma who had just had surgery - aged about our age - who the nurses put on to 'TLC', which included not giving drinks or keeping her mouth clean such that on my ward round she was severely dehydrate. I said to the sister I had not recommended this and she answered that since the patient had cancer that was their policy. I pointed out that the cancer was entirely curable, at which point sister went quiet.

Some days later the lady was sitting up in bed on Christmas Day and Father Christmas came around - a short tubby bearded man full of laughs. It was her husband giving out the presents. I continued to look after her and her arthritis for another ten years or so.

In Holland it is routine for older patients they tell me. Clearly it caries but Some of the comments at the recent inquest suggest that it was thought to be OK to let Maeve die because her ME/CFS was so bad that she did not have long to live anyway. That should never have been expressed.

 

I have done my best!
And to be fair this came out at the recent inquest.

 

I saw this highlighted by ME Research UK on Facebook:


Trial By Error: Post-Inquest Comments from Sarah Boothby, Maeve’s Mum

https://virology.ws/2024/08/20/trial-by-error-post-inquest-comments-from-sarah-boothby-maeves-mum/

“Again I am obliged to accept adequate funding for biomedical research – that produces verifiable evidence of disease – is the only route to us acquiring enough expertise for enough people to know how to safely manage ME. Maeve knew and understood this.”

 

I meant to the media - we were discussing how Sophia M wasn’t mentioned in the coverage on Maeve.

 

Well, I wrote my article specifically for the benefit of Sean O'Neil and it will have been seen by the Times journalists who wrote all the coverage, so I did do my best on that side!

 

https://twitter.com/user/status/1829151642081784196


ETA

#pwME can anyone give me advice on how to crowd fund for legal action arising from inquest findings, please?

 

Yes.
It’s amazing what members of the medical profession will say out loud.

 

Anecdotal but a family member of mine died of dehydration/starvation caused by another disease and at no point did any medical doctor offer any suggestions regarding nutritional support, or any help of any kind really. I used to think it was just those of us with ME/CFS who got this sort of treatment.

 

These are inappropriate generalisations based on being a visitor/tourist in two units. The reality is that if you have a "functional disorder" you will have your window blinds opened (which is difficult to cope with when you have light sensitivity issues), asked to attend the dining room for meals where there are loud noises and conversation (which is sensory onslaught for those with sound sensitivity), have constant nursing checks depending on your level of risk etc. Even during the night you will have a flashlight pointed at your face by a nurse to check if you're alive. It's really not a good environment for people with ME/CFS. A different model of inpatient care is needed for those who need nutritional support that isn't predicated on these notions of graded exposure and behavioural activation.

 

Absolutely, but the claim seemed to be the inappropriate generalisation that psychiatric nurses behave terribly to all patients.

Of course we want to root out the 'functional' paradigm. My point was that the problem was not that of being treated in a psychiatric unit but being treated in an inappropriate way in such a unit based on beliefs in approaches that have no evidence base.

I am trying to make the point that it may be more productive to move from the insistence that we know that ME/CFS is not psychiatric, which may be a well founded belief but actually has no evidence base, so is a weak argument, to emphasis on the point I put at the end of my Qeios article. The least we can say is that if there is any psychological component nobody has any understanding of what it is or how to treat it. In other words that those who have promoted a psychological approach have shown themselves to be totally incompetent. We need to stick to what we know keeps people alive.

When people have less common types of health problem they quite often turn out to be managed best on a 'wrong' ward. My wife actually did best when starving on a surgical ward run by an intelligent surgeon who she happened to have known as a trainee. He had to wangle it with admin but it worked. Her mental care was arranged by the community psychiatrist who could see the advantage of the arrangement.

The focus needs to be on keeping people alive with appropriate care rather than the turf wars that seem to dominate all these cases.