**Trigger Warning: Upsetting content**
The mother of a Devon woman who suffered from ME says she believes the events leading to her daughter's death could “too easily” happen to someone else.
ITV News
Extracts
Maeve's mother, Sarah Boothby, gave evidence at an inquest into her death on Thursday 1 August. It follows evidence from doctors who saw Maeve in the months before she died.
On Wednesday 31 July, Dr Thomas Fox told the inquest he'd never seen an ME patient with such severe symptoms as Maeve.
Ms Sarah Boothby said:
I’m hoping the inquest will explain how she died. She wasn’t expected to die, didn’t want to die. Death from ME is extremely rare – malnutrition is common. I believe she died from malnutrition and dehydration. I believe her death was premature and highly preventable.
She had three separate omissions to the Royal Devon and Exeter Hospital in 2021. It seemed to me the RDE didn’t respond to the severity of her condition and failed in its duty of care. It did not take available specialist expert advice on how to avoid malnutrition and dehydration in ME.
She needed tube feeding – Maeve knew the NHS couldn’t treat ME but trusted they knew how to tube fed.The appropriate form of tube feeding was never provided – the hospital’s response to her needs was inexplicable, at least to me.
She became weaker and weaker, unable to speak above a whisper, doubly incontinent. As she feared, hospitalisation exacerbated symptoms on every occasion. Test results were always ‘normal’ and it seemed to me that was the basis for a lack of treatment. The hospitals seemed helpless even though they had direct access to the best advice in the UK.
Ms Boothby – becoming emotional – went on to say that Maeve told her she didn't want to die in hospital.
She wanted only a loving hug. By then it was too late – all touch was excruciatingly painful. Maeve was starving to death – we all knew it. How the RDE didn’t recognise this must be for them to answer.
The inquest continues.
Further media coverage
- The Guardian: Hugs were too painful for ME patient before she died, mother tells Exeter inquest | 1st August 2024
- Daily Mail: Woman, 27, who died of debilitating ME was desperate for a ‘loving hug' in her final months but found it too painful to be held, inquest told | 1st August 2024
- The Times: ME patient wanted a loving hug but it hurt too much, inquest told | 2nd August 2024