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

Daily Mail (no paywall)
https://www.dailymail.co.uk/news/ar...-Maeve-Boothby-ONeill-NHS-failed-disease.html

 

Well, they used to believe that. They still do, but they used to believe that, too.

Mitch (E)dberg (B)ased (M)edicine (EBM).

 

On the aside…

If one were to conclude attitudes to non conformity or ruling classes expectations of the residents of this country have become less punishing over the decades or that the medical establishment had realigned its position in support of the people, their patients, one would be wrong.

Attitudes towards germs and germ theory on the other had have undergone a significant transformation. A devolution of sorts.

So I guess medicine has got what it takes to transform after all.

 

Yeah I thought that too.

 

I would have been too scared to watch it without your review!

A review I took to mean exactly what it said.

 

Full 15 minute Interview

https://www.youtube.com/watch?v=VP0ILUMb4jE

 

Good segment. It must have been a bit tough on Charles, having to host the TV crew and then get himself prepared at that time in the morning.

 

Getting myself in a mess trying to quote the relevant posts further up the page …

Just to say that I too found the interruption from the presenters frustrating.

 

Sarah and Charles did really well didn’t they.

Oh I thought he was on a laptop or something.

But either way that an early thing for a person ME to have to be in form for.

 

I have half a memory about a year ago of a GP, south Asian lady, doing a bit on GMB either Long Covid or ME and I feel like Richard was really interested and was saying she should come back on? So maybe he does have some interest and has done some research.

 

In response to @SNT Gatchaman report that the term "medicalise" and "medicalisation" is only even been used to legitimise biological illness, from his experience and specialty point of view (and other discussion from other doctors).

I think there is a difference in sub-cultures in medicine both between countries and between professional groups within the MDT.

I do not know where the dietician, looking after Maeve, leapt to the conclusion she had a psychological or psychiatric problem and strongly advocated to call Liaison Psychiatry in for an assessement. From what I have read here, Consultation-Liaison Psychiatry was "called in". Unclear if they did an assessment and found no psychological or psychiatric disorder as they have not been called in as witnesses. My understanding is that they were asked to do a capacity to consent to medical care (or in Maeve's case, refuse medical care on one occasion). I don't know what their view was but it is clear to me they thought she had a medical problem otherwise I think they would have become more involved in her case and we would have heard more testimony about this from Maeve's mother.

Everyone in the MDT brings their own personal bias towards a patient, what they may or may not have learnt in their training, their experiences with the illness (or not). Society is rife with BPS. Often people who have illnesses that don't fit peoples view of health and illness - these people quickly become stigmatised. I saw this a lot in psychiatry - from medical teams and many different professional groups. People (all people in society) are judgemental and quickly jump to conclusions when people behave "out of the norm" they quickly conclude people are faking it, wasting their taxpayer's money etc (or are mentally ill and need therapy). They then get angry and then punitive. You would be surprised how draconian people can be! Any unusual behaviour (and yes, some doctors have said to me - you have to take them to the psych ward now!) It beggars belief sometimes but we still have to unpick all these responses and manage the medical team (usually by education and discussion). And by listening to their patient and carers in the first instance and trying to understand what is going on for them, why communication is strained etc.

I wasn't taught ME was psychological at med school (late 80's) though I was taught about the theories of psychosomatic medicine and stress induced illness. If I recall rightly, they used Irritable Bowel Syndrome as an example (I just thought psychiatry was a bit weird and dismissed most of what was said) and it all seemed irrelevant to me and I can't remember any instances of "faked illnesses" etc in all my medical and surgical rotations both in the UK and NZ. It wasn't until I started to train in psychiatry, in the late 90's, that I learnt more about them and encountered them. I found them to be very uncommon but I have seen a small selection of them (or presented in peer review and grand rounds). They are very complex cases arising mostly from severe sexual abuse. I was also acutely aware of the phenomenon of "contagion" especially with a suicide in a school environment. That is why mental health clinicians, school guidance counsellors and staff work closely together to support all the students/staff following a suicide of a student. I have seen malingering, it is very obvious the person does not have a mental disorder. Sometimes we would err on the side of caution and follow them up and assess them for a longer period eg. get information from multiple informants (family, work etc) but mostly they wanted a bed for the night so they were advised to go to the night shelter.

I find the ever decreasing funding of Health by governments the biggest culprit in this drive to push out complex cases and not provide good explanations and medical (and where appropriate mental health) treatment. It is well known cases are becoming more complex across all areas of medicine. People are unable to afford health care and come to ED with more severe illness. That is the reason for frequent attendance not a mass hysteria event of MUS! Medicine has advanced technologically and with medication that can cure cancer but not the same emphasis has gone on chronic disabling illnesses like our own. @bobbler, the medical profession are forced to economise and restrict investigations and it really is a crisis (well in NZ anyway...). And it does suggest that later generations of doctor's may be being trained with more emphasis that MUS is psychological and we don't want to medicalise them i.e. reinforce their behaviour. I do wonder if this is from economic pressure from all the cutting of health budgets.

This term "medicalise" can mean two things, 1) don't do invasive procedures until you have tried all the non-invasive ones, that is a safety measure as the more invasive, the more risky. And Maeve had the usual first stage of treatment with only 10% of her BMI reduced i.e. do investigations, (I don't know what they did or if she had any but she was diagnosed with GERD (Gastro-Esophageal Reflux Disease), so presumably she may have had a gastroscopy. Perhaps given meds for this and to try certain nutrient drinks tailored to her intolerances etc, they were late coming initially but then things deteriorated over some months and there was no medical HCP overseeing this or a comprehensive plan of treatment. Or they really didn't understand PEM and how fatiguing their policies and interventions can be. I believe a considered, slow and careful plan to investigate should mitigate that. People have to have the investigations so the physician can confidently say it is the best course of treatment.

But in psychiatry "medicalise" is to do unnecessary medical tests and invasive interventions because the person has an indisputable mental disorder. Or they have both, a medical problem and a psychological/psychiatric one. I have seen this as a community psychiatrist. The practise of medicine is to relieve suffering and many doctors try very hard to get thorough investigations to rule out serious pathology. They are referred to see a specialist, they, too, want to be thorough - suddenly some very mild derangement in liver function and an ultrasound of a fatty liver, becomes - they may have cancer and suddenly they are having a liver biopsy. In the meantime, the GP is astounded that their patient is having invasive procedures and referred them to community mental health and it is obvious to us that the person has a severe anxiety disorder. Treat the anxiety disorder and they return to normal functioning. Anxiety is a very difficult area in medicine. A very concerned, anxious person does make clinicians anxious that they are doing everything they can.

This is where Iatrogenic (Doctor Induced) Illness and Jonathon's discussion about hEDS is very important. And the influence of social media and publicity by patients that pressure the medical system to behave in a certain way. It can turn into a massive quagmire.

I don't know enough about EDS to have an informed opinion on it but I am seeing increased reporting of it here and the lack of specialist care, much like ME. Actually there are several pwEDS in ME/CFS support groups in NZ. But I think the hypermobility aspect may have taken on a life of its own, just like Tic Disorders - Not Otherwise Specified.

It does appear that more research into Autonomic problems needs to occur and become more legitimised throughout all areas of the medical profession eg. Heart, GI tract etc. Rather than be put down to "anxiety" or "functional" illness

I was very impressed by the Good Morning Interview, thanks for putting it on YouTube @Adam pwme

So it seems now the RDUH is now the place to call for help with very severe ME in the UK?

Edit: I inserted a statement about government's funding of health.

 

Royal Devon Hospital has been successfully tube feeding at 10% incline, so any other NHS trust insisting on 30 or 45% incline feed for pwME is now on very shaky ground.

 

Theres a thread here dedicated that sort of thing. Just search Google for: S4ME "Bad ME"

 

Sarah seemed very strategic in the interview - I thought it was impressive. She came across as anything but "some type of mad mother", looking for a better future for us all, even while knowing that was deliberately denied to her precious daughter.

And engaging RD&E / RDUH who screwed this up so badly, and essentially forcing them into a corner to adopt the role of Centre of Excellence and reference site for the whole NHS is pretty smart.

It's a bit like the famous story of Tom Watson at IBM —

“Recently, I was asked if I was going to fire an employee who made a mistake that cost the company $600,000. No, I replied, I just spent $600,000 training him.”