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

Coercive control was 80ish

 

Is the other thing FII? Fabricated or induced illness, what they used to call Munchausen’s. Again, like true FND, this is quite rare, even rarer by proxy.

 

Sickening.

 

This is where the BPS paradigm leads - sadly Maeve's case succinctly sums it all up.
ETA - FII - it would be interesting to determine the impact of paediatrics which would no doubt set the tone.

 

Firstly, the evidence of Blackburn (sp?), the community dietician:

* His involvement stemmed from an urgent referral by the GP (Shenton) - poor fluid intake, unplanned weight loss. He didn't meet either Maeve or SB face to face; spoke to SB on the telephone 3-4 times. The referral made reference to a letter from Dr Weir & included the diagnoses of ME/CFS and GERD. Waiting lists were quite long (not unusual for several weeks or months) although was flagged as urgent by the GP. Met criteria for referral: not underweight at the time although at risk of malnourishment due to significant unplanned weight loss. 10% weight loss in 3-6 months considered a red flag.

* Tube feeding cannot be initiated in the community but requires a hospital admission; for instance an X-ray is required to confirm positioning and someone has to sign off that it has been correctly placed. If this were being considered at the same he would have expected the GP to arrange a hospital admission rather than a referral to a hospital dietician.

* No-one suggested to him at any time that Maeve lacked capacity.

* When he worked in other services he had performed many more home visits; he mentioned receiving referrals in those other services from people who were elderly, housebound & that have poor appetite but without a great deal medically wrong & how he would visit them at home and discuss how to optimise their appetite. However in Devon there wasn't such a commissioned service - home visits were more unusual and only for those with feeding tubes.

* He did manage patients with NG tubes in the community although caseload was small. Didn't recall caring for anyone on an NG feed in the community in 2021. He mentioned there was a separate upper GI service usually used by cancer patients for short periods; he would not have necessarily been aware of patients using that service. At present his team is aware of two patients on NG feeds in the community; most enterally fed patients under his team have a gastrostomy.

* During his testimony it was notable that he only referred to a 30-degree angle for enteral feeding; the 45-degree angle was not mentioned at all. There is something of a disparity between witnesses with this. He also said that it is policy that patients must be propped up to 30 degrees for an hour after feeding. Asked if he was aware of anyone now who was receiving feeding via an NG while lying flat he said he was not. Asked about NJ he said he had never worked anywhere where you would feed someone with an NJ while lying flat either.

* He was asked regarding patients with enteral feeding at home - how mobile & independent they have to be? He replied that it varies - some patients are very independent & do everything themselves; in other cases they are bedbound and reliant on carers who have been appropriately trained. Emphasised that there has to be provision that they will be adequately cared for throughout, not e.g. vomiting or left on a pump. A discussion of what is required with NG feeds (e.g. needing acidic aspirate before introducing feed/medication/flushing).

* He mentioned that most pts with NGs have an impaired swallow reflex so greater risk of aspiration pneumonia, which concords with Weir's testimony to a certain degree.

* It was apparent that there were significant difficulties with Maeve being intolerant to nutritional drinks that were supplied, such as one where it was felt the intolerance was due to its dairy content. He mentioned a document produced by the British Dietetic Association and also that there wasn't evidence for special/restrictive diets. In the same context he mentioned people with IBS who "may feel" that certain foods are not tolerated and speculated that a sedentary patient was more likely to experience reflux.

* Asked by the C about his comment that it was unusual to be able to take a volume of water but not other nourishing fluids - she had thought that a manifestation of ME was that the gut would not want to accept food? He replied that in his experience he would expect someone to be able to manage a liquid supplement which has a high water content - most of those supplements are around 75-80% water so certainly is unusual that someone couldn't manage more of those supplements but could still manage fluid intake. (Again, I think a lack of understanding of the sensory sensitivities of very severe ME.)

* Again mentioned that the oral feeds are the same as those given by NG - only discernable difference being flavour of oral drinks. There were discussions about the nutritional value of different types of drinks and feeds which I shall omit. Notably he said that she would likely have had elevated Na+ needs b/c of POTS (6 g/d recommended normal limit but some consultants recommend up to 10 g/d).

* A discussion of how the calculation of someone's requirements has changed since 2021: back then they would use Henry equations but more simplified now. A discussion of BMR and DIT and that the Henry equations can overestimate requirements in inactive patients & that clinical judgement important in that context.

* A number of potential red flags for me: discussing anxiety over eating, discussing her "beliefs" about what she is able to tolerate and that as she slept much of the day there was not enough time spent awake to meet nutritional needs. In his notes he discussed the possibility of a DOLS and contacting a CFS service in Bath. He felt she needed a "long stay" in an inpatient unit, potentially at least 6 months, although he did acknowledge potentially stepping out of his lane. He stated that as placements for ME were difficult to obtain it may be easier to obtain help if it were treated as an eating disorder. He, too, mentioned the possibility of over-medicalisation.

* He was asked how much experience he had with severe ME. He mentioned one case where he had looked after a patient with severe ME who was able to tolerate solid food but whose ME was so severe he was being fed by his mother using a spoon, had a mask over his eyes & who communicated in whispers. He mentioned that this patient had been treated at the Leeds centre. When asked the outcome of this case he stated he had no personal knowledge but that he had read in the newspapers that the patient in question had died (!!)

* He also mentioned that in a previous job he had received referrals from patients who had ME in their records but who required tube feeding for other reasons: in one case diabetes, in another idiopathic gastroparesis.

* Sean asked, referring to certain emails he had written, asked him if it was not strange that there were more options available for those who had been sectioned? He replied - backtracking and waffling a bit - that in those emails he was trying to "think of every possible scenario", saying he was not suggesting that Maeve was incapacitated mentally. He then went on to waffle about "extreme scenarios", mentioning a previous patient who thought everyone was trying to poison her and who ended up with a gastrostomy & giving various other unusual examples, emphasising that he was only trying to consider every possible way forward and potential scenario.

* Sean asked whether not being commissioned means that there is not enough money to provide the service; he agreed with this, mentioning being able to see 28 patients in 4 clinics whereas if you can only see 12-16 patients via home visits waiting lists increase. He mentioned that in other services he had worked in they did more home visits for people with feeding tubes and again referred to what was commissioned in the area and that more recently they had seen more such patients at home.

* Sean also asked about reports that there are now patients at RD&E being treated with a PEG and that Dr Strain had testified that people have since been fed at a 10 degree angle. The coroner interjects to say that will be a question for Dr Hemsley.

I'll start another post for the next witnesses.

 

To be fair C Parker wasn’t particularly involved with Maeve and seems to have mainly worked in the period Jan-March, with just odd bits of involvement, I think it’s the latter.
However it begs the question, if C Parker didn’t meet Maeve and Sarah, who at DCC wrote those notes?

 

The second witness (Riches) - clinical matron (gastro & diabetes & endo). She described this as a "matrix role", working across wards & services. Lowman came under her "portfolio". Clinical matrons don't take on specific patients, working in more of a backend role. No specific clinical matron training, more a question of experience - started training as a registered nurse and need to be one by background. Multiple wards and services under her portfolio. Not involved in the first admission at all. Most of her testimony appeared to be derived from her reviews of the notes rather than direct experience.

* There was a request for a ward move to a side room or quieter. She said she was not involved in these decisions; that being a matter for the clinical nurse manager on the ward and what she called the "site management team" who manage beds across the hospital. The plan to admit Maeve was that she be admitted to Bowman ward (neurology), but she ended up on Lowman; apparently the decision of the "site managers" (responsible for bed allocation & where patients are assigned) was that she should be admitted to Lowman as the team knew her care needs better. But on Lowman work had gone into training nurses in the management of eating disorder patients. There were discussions of meetings & discharge plans, care visits and packages and contacts. (Why a "site management team" was allowed to overrule Maeve's own consultants as to the most appropriate place for her to be I do not know.)

* She was asked if anyone on Lowman ward had any specific training in ME. She replied that although she doesn't work there now she didn't believe so. Asked if someone was coming in with severe ME there was any attempt to give on the hoof training? She replied that in general when patients come in with conditions unfamiliar to nurses they may consult guidelines eg NICE or talk to family/carers as experts in their own conditions. The coroner pointed out that there was nothing in the notes about NICE guidelines being consulted - asked if aware of strategies to help her - other than a reference to Strain and pacing she said she was not aware of any specific education provided at the time. Asked if there has been since she said she was not aware of training on Lowman or other wards but that since that time there had been patients with severe or very severe ME admitted to the RD&E.

* Arm circumference was used as a proxy for dieticians to estimate weight as she couldn't be weighed. Reports of nutritional intake in the notes were incomplete. Could have been more regular reviews by CFS consultant but no CFS inpatient service. Asked about her role re incomplete food charts - says that is the responsibility of the clinical nurse manager. She agreed that it appeared there were incomplete or missing entries.

* Questions about the location & capacity of the ward; nursing levels vs. number of patients, number of HCAs - I won't summarise all of this. She mentioned that "acuities" are measured by a tool called "Safecare" (sp?) and this tool will assess the needs of the patients; additional staff can be requested if needed but not always enough staff available.

* A discussion of Maeve's routines & when her medications were usually given which conflicted with established routine drug rounds. Discussions of MAR charts and whether prescribed foods would be adequately recorded. Feeding policy (as well as NG policy) required patients to sit up and she testified nurses would be unable to feed her orally from a syringe as had been done at home. Discharge planning discussions notable for the fact that two external homecare agencies were unable to feed her while supine. (Again, it seemed to me that bureaucracy and procedure consistently trumped common sense and humanity.)

* She testified that the "clinical matron for patient safety" has put some material together pertaining to individualised care plans and can provide nurses with support and education. The coroner replies that she is looking forward to hearing about that from Hemsley.

 

The third witness was Christine Parker, social worker. She could only assist with the Jan-mid April period.

* She was asked if any creative thought was given to including Maeve without needing to meet her face to face? She replied that as they hadn't seen her in a number of years and hadn't done a new Care Act assessment - the old one was apparently not in line with changed legislation - a new assessment would be required. Considered Teams, letter, emails, liaising with GP. Concerns with SB's distress & anxiety over intensity of the caring role as well as concerned with the report of Maeve being bedbound for 3 weeks. Referred to difficulties in "accessing" Maeve. Lots of details about liaising with different members of different teams, contact with GP, etc. SB had contacted the safeguarding hub saying she needed help but no-one was helping. Discussions of various possibilities like arranging for an advocate but Maeve wasn't able to speak to the advocate. An attempt to hold a Teams meeting with Maeve's PA didn't go ahead as difficulties establishing consent. (It seemed to me as though they consistently placed bureaucracy and procedure over common sense.)

* Asked about conversations re

Spoiler

coercive control or MBP there were no conversations between her and the hospital; in the same context Sean asked about the nine references to MBP, & further references to FDIA & coercive control in the DCC documents and asked if that coloured the attitude of social workers - "did you put suspicion before compassion"? She replied that she had not heard any suggestions of Munchausen's before today and that she was focussed on the assessment and others were focussed on the safeguarding aspects.

The coroner interjects that perhaps those questions can be asked of the safeguarding witness tomorrow.

* Clear that the extent of Maeve's needs were not remotely understood. Witness testified that she had never performed a social care act assessment on someone she hadn't had a conversation with. Discussion of communications from SB expressing the view that there was neglect by social services who had no understanding of very severe ME. Clear SB had tried a great deal to get help; there was even a reference to a letter to a local MP, for instance. It was clear that her sense of urgency - including stating explicitly that it was a matter of life and death - did not translate into action by the social workers. Notably the possibility of Maeve leaving voice notes for the social workers when she was able was raised; the council seemed to find this difficult and unusual. (Again, a great lack of understanding of very severe ME.)

I'm now quite exhausted so I shall leave it there, although I do seem to have a large number of jotted handwritten notes again, so if anyone has any questions, feel free to ask and I shall try and answer when I can.

 

DCC is Devon County Council, they have the responsibility for Adult Social Care, Safeguarding referrals and Social Workers.

It’s right that they consider FIDA/Munchausens by proxy, what’s concerning is that they seemed to have spent a lot more time thinking about that than Maeve’s care at home.

 

There’s a lot of DCC documents, they would include referrals, social worker notes etc. It’s basically their file of the work with Maeve and Sarah. Unlikely to be info from DCC on ME to employees, that would be NIcE, NHS or a ME charity document they might have copied for info.

 

I've tried several times to pitch pieces to Guardian and other UK press. It hasn't worked.

 

In areas in England (not sure about other nations) the local Council and local NHS have a local “health and well-being” board also known as ICB = integrated care board, which plans health and social care needs. I think this high level planning is a key area where S/VS ME care needs to be discussed, to avoid the total lack of care Maeveand Sarah got in the community as well as in hospital.

 

Regarding the photo on the Observer piece...I understand the concern. But both parents are media savvy and aware of the coverage. I don't really think they need advice on this and it doesn't really feel like my place to make suggestions without having been asked.

 

Sean is a journalist, I’m sure he’d anticipate this might happen.

 

It’s hard to know, as we don’t see the 6,600 page bundle of evidence. I’m absolutely willing to accept a social worker hasn’t read the file. I just want to know who was writing these comments!

 

definitely.