Family medic who tried to save woman, 27, who died of debilitating ME tells inquest other NHS staff trying to give her care were not even doctors and had ‘lack of understanding’

A family GP who desperately tried to save the life of a dying ME patient condemned other NHS staff for having a severe ‘lack of understanding’ when it came to treating the tragic 26-year-old’s condition, despite warning them that if no immediate action was taken on her patient’s malnutrition she would ‘certainly’ die, an inquest has heard.

Maeve Boothby O’Neill, 27, was left bedridden and unable to eat in the final months of her life due to the severity of her myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS).

Her family believe her death in October 2021 exposed ‘a major systemic failing’ of the health service to both understand and treat severe cases of the condition.

Now Dr Lucy Shenton – who had been too unwell to attend the inquest into the death of Maeve, which began this week – provided written answers to questions posed by the coroner.

Significantly, she called for more research and funding into ME to provide better guidelines for clinicians to work from, a specialist unit to be set up and for patients’ voices to be heard.

Family GP Dr Lucy Shenton, who desperately tried to save the life of  her dying ME patient Maeve Boothby O’Neill (pictured) has condemned other NHS staff for having a severe ‘lack of understanding’ when it came to treating the tragic 26-year-old’s condition

The inquest at Devon coroner’s court in Exeter heard that there are no treatments and no specialist units anywhere in the country to help anyone with severe ME.

In her answers, Dr Shenton said: ‘I would like to acknowledge that there were many professionals involved in Maeve’s care who were not doctors. 

‘In considering Maeve’s case, I suspect their lack of understanding of severe ME was relevant.

‘This is likely to have fed into the assessment of information available to the doctors making their decisions.’

Dr Shenton said just days before Maeve died, she wrote in an e-mail about the nurses: ‘This is so far out of their comfort zone…the first time people come across this case there is doubt and misunderstanding and it seems to take a variable amount of time for the penny to drop this is ME. 

‘It can take months/not at all.’

She had said that several doctors did not accept that ME was a medical problem over the time she knew Maeve.

But she said from April 2021 when she took over her care there was ‘only one consultant that expressed doubt that ME was a medical problem (with a biological basis) and I cannot comment on how that may have affected the care provided’.

Dr Shenton said she had wanted experienced medical professionals to ‘take ownership of Maeve’s case and ensure ongoing continuity of care when she was discharged, with a safety net if she deteriorated further’.

She said Maeve stopped eating on August 20 2021 and on September 8 she noted that ‘if nobody acted in respect of her nutrition she was certainly going to die’.

Dr Shenton wrote: ‘As a young woman in such a perilous condition she was potentially a candidate for every level of support, but I remained uncertain as to the medical plan. 

‘I was trying to balance this with helping Maeve control her symptoms and provide the holistic care to ensure a good death if she were to die.

‘She was future focused. She had a lot of fight in her and wanted to get better.

‘There was nothing to suggest a thought disorder, personality disorder or eating disorder. She was hungry and wanted to eat. 

Sean O’Neill, a journalist for The Times, pictured with his daughter Maeve who died in October 2021

‘She was distressed by waking hungry at night and was concerned by her poor nutrition.

‘She was intelligent and reflective and had thought deeply about the care she did and didn’t want and was articulate enough to express this in few words.

‘It was also my impression that these decisions were entirely Maeve’s own decisions without coercion.’

Dr Shenton said clinicians needed clearer guidelines on helping patients with ME.

‘Although Maeve had severe ME some of the problems in her care would apply to any complex unwell patient with bespoke needs. 

‘Clear systems with appropriate safety nets ought to be in place for any patient who has a condition for which there is a lack of evidence and/or a lack of guidance about best practice.’

The GP was also asked whether she had told Maeve’s mother Sarah Boothy that she had ‘never seen anyone so badly treated by the NHS’.

Dr Shenton said she did not recall saying this, adding that if she did she apologised as it would ‘not have been a helpful comment to make to a bereaved relative’.

She said at the time she had been trying to manage Maeve’s case as well as other complex cases and her normal GP workload.

Dr Shenton called for more research and funding into ME to provide better guidelines for clinicians to work from, a specialist unit to be set up and for patients’ voices to be heard. Pictured: Exeter Coroner’s Court where the inquest is being heard

Dr Shenton said Maeve felt by April 2021 she would rapidly deteriorate and die.

In her hospital admission letter in May the GP wrote: ‘The impression Maeve and Sarah seem to have is that NHS care is inadequate for ME and people with severe ME die unless they take it upon themselves to manage their own care.

‘I was concerned that my earlier expressions of faith in the NHS could have been seen as another example of someone not listening or not believing Maeve. 

‘I had been genuinely optimistic earlier in the case.

‘It was not that I previously thought the NHS was infallible, but that where systems failed or where the NHS didn’t provide, I was used to marvellous clinicians stepping up to fill the gaps and somehow muddling through.’

Earlier Sarah Boothby wept as she told how her pleas for help were ignored as her daughter was left ‘completely paralysed’ and ’embarrased and humiliated by her own presentation’ by this ‘terrible awful disease’.

The inquest continues.