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

Thanks @dave30th. Helpful. I wonder how Dr Shenton is now.

 

The first witness was Dr Fox.

* Was asked if he believes ME was a real condition; asked for clarification on what was meant by "real". Stated there was uncertainty even among experts as to the underlying causes of ME and while he thinks it "exists" clearly the underlying cause was uncertain at present. He further stated that as with all health conditions there are elements of physical illness impacted by psychological and social factors and does not believe that in any condition these can be separated out. When asked if he had any training regarding ME he stated that he didn't believe there was any specialised or formalised training for ME; although there was a huge curriculum for general internal medicine he didn't recollect if it was covered in that. He had experience managing patients who had an ME diagnosis and in reading communication from their previous ME specialist, a Professor Tim Harrower.

* He described how his unit works: received referrals from emergency departments, GPs, paramedics & other allied health professionals. At the time they had started something called "triage hub" where referrals were discussed by a senior nurse & it was determined which part of the acute medicine service they should attend. He mentioned up to 100 referrals in a 24 hour period. A presumption large number of referrals to an acute medical unit do not result in admission; often care can be managed in a different manner. Policy best place of care is a patient's home and to that end the hospital is providing more in the way of home care than in the past. In March 2021 they were coming out of a bad COVID wave where vaccinations were not widespread and the risk of hospital transmission was extremely high & there were severe restrictions on visiting - SB would not have been able to accompany M as she could communicate for herself (!) Broader COVID restrictions in place & M & SB had been essentially isolating at home for the past year. Pandemic changed risk/benefit. Side rooms essential for COVID at that point; couldn't have promised her one & concerns over her being on an open ward.

* Initially assessed by nursing staff; low triage score. Seen by junior - obs unremarkable; slightly low BP but not abnormal in a young female pt. Cardio, resp, neuro assessment, no focal neurological signs, no difficulty speaking or swallowing saliva or anything that would have raised swallowing concerns; felt formalised SLT assessment unnecessary. Said she appeared severely affected by ME & sensory stimulus & movement seemed challenging for her but from acute physical health perspective relatively well. Didn't have more to offer in hospital: not going to offer NG feeding or hospital-based nutritional support.

* They would always take a stepwise approach - at this point not a proportionate response to initiate NG at the time as less invasive options; needed thorough dietetic assessment in the community. Nutritional supplemental / oral build-up drinks seen to be most appropriate as no swallowing difficulty, no physical health problem that could be treated. Needed dietetic assessment in the community. No other explanation for her deterioration other than her ME; discharged back to GP & community care.

* Couldn't remember if he recalled seeing M's advance decisions at the time. SB asked if he understood now why she didn't want to have more tests: he replied that some testing was justified due to possibility of infection or metabolic problems.

(I do wonder to what extent her wishes in her advance directives were respected.)

SB asked him what knowldge of PEM he has acquired since as they have heard nobody from the hospital express an understanding of how PEM affects pwME. Fox replied that his role in acute medicine entails seeing a very wide array of patients; having a small amount of knowledge about a lot of things. Was aware of fatigue disproportionate to activity but couldn't have quoted the diagnostic criteria. He said he had learned about some more specific symptoms more recently.

* Sean raised a very interesting note made by a GP (Campling) with regard to a conversation with Dr Fox, which I transcribed as best I could:

They can't find anything medical. Feels it is functional. Can drink if wishes to. Able to go home but not at all happy. Anxiety. Has spoken to her on her own. Full neuro exam. Nutritionally OK, can't see any medical reason to keep in

* He asked Fox what he meant by "feels it is functional", saying he was aware of a term "functional neurological disorder" used to dismiss conditions like ME. I tried to transcribe Fox's waffly reply:

Functional is a term we use commonly in medicine, certainly in the context of functional neurological disorders but also in lots of other contexts as well - it describes an individual's ability to do a task, so we might use the term if we're describing an elderly person having a decline in physical function which might mean their ability to do tasks of daily living or walk around - a bit of a broad term, certainly doesn't solely refer to a functional neurological problem.

(Unfortunately he wasn't challenged on the fact that "functional" could really not mean anything else other than "psychogenic" in that context.)

* Sean asked about the "can drink if she wishes to" comment: are those your words? Fox said he couldn't recall. He further asked, given that the testimony was that ME wasn't a terribly rare condition, if Fox found it surprising that there was no medical school training. He replied that he thought it was quite heterogeneous and affects patients in a wide spectrum of ways; didn't think that many clinicians would have encountered someone as severely affected as M and that while he saw it on his patients' diagnosis lists thought it rare for it to be so severe as to require admission. Also said that there are a huge number of conditions for physicians to be aware of and their degree of knowledge depends on their role and responsibilities. When asked if he would have assessed an MS patient differently he said he would not.

* Suggested there were better procedures now: more specific arrangements for patients with severe ME managed by a single point of contact, more coordinated approach to be taken. Asked if a hospital environment was the best place for someone like M given ultra-sensitivity to light & sound & touch he replied that acute hospitals are not best placed to support; side rooms can be allocated & support given by staff & they do make adjustments for patients with other disabilities and health conditions but in an acute medical ward particularly difficult as open 24/7 & difficult to find quiet areas.

The next witness was Beth Thompson.

 

I get the strong impression that there is a pressure group based in the UK that wants to say that to get TPN and maybe PEG you should have a non-functioning gut and that this revolves around the idea of 'functional' problems. It may be quite recent. It may be that the most useful specific outcome of the inquest is that it may identify a need to re-write this - or at least to be more honest about what is meant and a justification.

 

@ukxmrv, may I ask when you wrote above ‘Buying onto their belief it is a medical’, is ‘their’ referring to Maeve and is the dietitian claiming Maeve wanted her to acknowledge her ME was a medical illness? Many thanks.

 

Beth Thompson, dietician.

* A lot of discussion about specific calories & nutritional levels at different times. Concerns with inadequate nutritional intake (dropped to 900cal/24g protein at home), intolerance to nutritional supplements. Believed a coordinated MDT approach required & management could not fall to community dieticians. Discussed at feeding issues MDT; plan to admit to optimise feeding even though everyone was trying to keep her care at home.

* Said M was often not awake long enough to eat and declining certain supplements due to her /belief/ about what she was able to tolerate. She noted that M was not referred to psych liaison during her last admission but believed it should be considered. She believed that M would "benefit from enteral nutrition" but that this "may be over-medicalising a psychological issue".

* When asked by the coroner if that meant she was implying that M was making it up, she replied no: that when people are experiencing a long-term chronic condition that it affects their mental as well as physical health and also ensuring that there isn't an underlying depression. (That would not adequately explain the over-medicalisation comment, which has been an opinion offered by a number of individuals involved in this process.)

* A lot of detail as to how & when M was fed, weight, BMIs, etc which I won't try to summarise as well as a long discussion of which feeds she found difficult to tolerate. Obviously intolerant particularly to fats which I thought notable, and observed that fatigue/PEM principal limiting factors as well as intolerances. Her first patient she had managed with ME.

* She then segued into a discussion of NICE guidance with the coroner: at the time there was no national guidance for the dietary management of patients; there was a reference to the NICE nutritional guidance (written in 2006, updated in 2017). The coroner asked if she had looked at the 2021 NICE ME guidance: she said she had, and that she believed the only new addition was that severe patients may need tube feeding but then it then referred back to the 2006/2017upd nutritional guidance.

* Again, a discussion of aspiration risk and positioning. Elevated positioning was "set as the first goal" if they were going to potentially move towards enteral feeding. Asked by the C if, back in 2021, it was possible to enterally feed a patient supine she replies that standard clinical practice was at least 30-40 degrees & that hasn't changed even now. She says she appreciates with hindsight the effect that might have had on M.

* Felt that M was in a "Catch-22": her ME needed to improve in order to take more nutrients in but she couldn't take in adequate nutrition because of the ME.

* A difference between witnesses as to whether the NG feeds are identical to the nutritional drinks: she said the NG feeds themselves are a different product - more nutritionally complete & designed to be sole source not to supplement intake. Other witnesses had said they were the same; she explained this by saying that in M's case they put the same product down the NG that she had been drinking & did not switch.

* Another difference between witnesses as to whether patients were being given NGs in the community (Blackburn said there were). She said they did have some NG pts in the community but these are patients that are fit and well other than their swallowing difficulties, giving the example of a patient being treated for head & neck cancer. At RD&E do not routinely send patients home with NGs as no service in the community to support tube displacement or aspirate checks. A question about whether she could have gone into a hospice as an alternative because of the sensory issues in hospitals: she replies she did not think so because enteral feeding requires certain qualifications / "competencies" that need to be maintained that hospice staff wouldn't have (which seemed to me to be very unusual). A discussion about checking the acidity of the aspirate each time an NG is used, etc.

* Strain (who she called Dr Strange) had recommended a 10 day period of NG feeding in order to improve her energy so she could subsequently transition back to oral intake.

* When they did the NG trial they preferred bolus feeding over pumps: needed to be sat up for much shorter amount of time, pumps beep & occlude, etc.

* Wouldn't consider NJ unless gastric outlet obstruction. Also pointed out not a ward based procedure - needs endoscopy/interventional radiology, tubes block quite easily & migrate back up into the stomach easily. Discussion of the NICE nutrition algorithm/decision tree. Discussion of the dangers of parenteral feeding - line sepsis risk, 2 nursing visits per day, etc.

* Asked by SB about the "over-medicalising a psychological issue & is it in her best interests" comment: she says that had not met M at that point and that they do have patients who present with gastro issues that are psychological in origin & with those patients they work with the psychiatry team, & by giving them medical treatment such as NG feeding would be "buying into their belief that it is a medical situation" and that therefore they don't get the psychological treatment that they "need".

 

Social services safeguarding witness, Sarah Leech (now Clarke), joined via Teams. Didn't seem to have access to the relevant documents and a great deal of time was spent reading them out. Originally a registered general mental health nurse, now a community manager of the DCC health and social care team.

I'll be brief with this one as I'm struggling now.

She was contacted by the county disabilities team who were trying to arrange a Care Act review & were concerned. Discussion of how the hospital and DCC safeguarding teams work together. Referral re SB wasn't a referral from the hospital. A meeting of medical professionals & social workers took place; it was quickly established there was no evidence to substantiate the safeguarding concern and the referral was closed fairly quickly after it had opened.

Sean questioned her about the

Spoiler

references to Munchausen's & FDIA throughout the documents (as per yesterday's testimony) and asked to what extent that prevented a compassionate approach? The witness was not able to give detailed testimony on this - apparently the first references were from a Tim Jackson, an "approved mental health practitioner" employed by DCC but who fulfills a dual role for DCC & the NHS Trust. Apparently there were no mentions before the home visit of 10 Sep.

She emphasised that there was a discussion but no evidence to support it & nothing came of it.

After M had made a request to be safeguarded from neglect by health & hospital teams she was apparently replied to by letter advising her that this was not within the remit of adult social care & suggesting she complained to the GP practice & to PALS for the hospital.

On a number of occasions the witness stated that "safeguarding can feel very personal, but it's a process". (as though being procedural somehow obviates it being deeply personal?)

~~

Unfortunately I don't think I'll be well enough, based on how I'm feeling now (pre-PEM warning signs), to even listen in tomorrow. If anyone has any specific questions from any of the days I've listened to I'm happy to try to answer them from my notes.

Sarah & Sean will be testifying tomorrow - first hearing from Sarah from 10 AM - and apparently Dr Hemsley will be there to listen to their testimony so hopefully there will be more significant coverage from others & in particular from the media.

 

Thank you nightsong, very illuminating. I guess with Sarah (and Sean)we won’t be hearing so much fact and medical details, it will be more their heartbreaking accounts of dealing with these people whilst trying to keep Maeve alive.

 

Thank you so much @Nightsong . I have been listening every day and did take a lot of notes on the first two days but I then had to stop. Your summaries have kept everyone involved and informed and your stamina to do so much is inspiring.

 

Huge thanks, once again @Nightsong.

Did she give any indication of the diagnoses of these patients with gastro issues that are psychological in origin?

Are there psychological conditions where patients falsely believe that they have a medical problem which is preventing them from eating when they say they are hungry and want to eat?

The sepsis risk keeps coming up. Are there any records from the time that Maeve was being treated when that was flagged as a risk? Or is this just what is being said retrospectively?

 

Thank you very much. The twitterverse is very emotive and piecemeal so I’m glad we’ve had some full reports back!

It’s going to be a long wait until the interim decision next week.

 

Great point. “Medicalising” a patient with a psychological problem, let’s assume that happens. Consequences? Potential side effects like the much-noted “gut will forget how to work” and psychologically more difficult to change their misguided beliefs.

Not treating a patient with a medical issue because it might be a psychological one? Death.

 

Agreed. My daughter has had two craniotomies for her brain tumours (yes, plural, she never does anything by halves) - the first time, she was lucky enough to be put into a private room for her recovery, which helped her enormously as she already had post concussion syndrome and fairly severe sensory overload. The quiet and dark meant she was able to travel home, a two hour drive from the National Neurology Hospital in London to our home in Cambridgeshire, without too many awful symptoms. The second time, a different hospital (the surgical team were too-notch, can’t complain about that) but she wasn’t able to have her own room despite us requesting it and ended up on a six bed ward. She found it completely intolerable to the point where she was crying in distress but they just had no spare rooms as they were already occupied and after three days she insisted on being discharged so that she could come back to the flat her father and I had rented so we could be close by for her op and recovery just to get some respite. Absolutely not optimal for a two time brain surgery patient, but she felt she had no choice.

We ended up staying an extra week in the flat just so that she could have quiet and darkness to recover in. She’s convinced that initial overwhelming amount of noise, light and busyness that pushed her over the edge into severe distress meant it took her significantly longer to recover the second time around.

 

It is interesting that the RCP advice on feeding difficulties does not mention any such conditions beyond 'functional problems' which the text relates to EDS (rather bizarrely).

My wife had a psychiatric condition in which she falsely believed that she had bowel obstruction and would inevitably die but she did not say she was hungry and wanted to eat. She had a paranoid psychosis and needed ECT. No amount of trying to persuade her would have helped, so 'medicalisation' was an irrelevance. Nothing was going to change her belief one way or the other.

But the implication is that there are patients who have false beliefs about biomedical causes of weight loss or inability to eat that are neurotic rather than psychotic (i.e. in theory amenable to persuasion otherwise). It would be interesting to know what these patients' problems are like and whether there is in fact any recognised psychiatric treatment.

Maybe she is referring to the other patients with ME/CFS who have been misdiagnosed and suffered much as Maeve did.

A new diagnostic category has recently been created which is sort of anorexia nervosa without the body dysmorphism aspect. It is chiefly a diagnosis in children I think and remains contentious.

 

Sepsis from TPN is a very real problem. Septicaemia is frequent and can be fatal. There would genuinely be a balanced argument about which was more likely to lead to death TPN or no TPN. But my understanding is that for PEG (enteral feeding through a tube into the stomach via the skin) is not in any way as high a risk. It has other problems but less immediate and catastrophic.

 

And how invasive is the procedure to have it put in?

 

It involves putting a tube through the skin into the stomach.
It is done endoscopically.
I am not sure what more one can say.

 

In what situations is it usually worth the risk?

 

Intestinal failure mainly. It's usually considered the last resort when patients cannot be adequately fed enterally.

 

They made it sound like she would need sedation, x-rays, an operation etc. Is it on a par with wisdom teeth out under general, or (actually I’ve only had my wisdom teeth out so I have no comparison) less painful