The father of a woman who died after being 'left bedridden and unable to move due to ME' says the NHS has 'absolutely no specialist service' for people with the condition.
Sean O'Neill's daughterMaeve Boothby O'Neill, 27, died at home in Exeter at 3am on October 3, 2021, following a battle with 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.
Mr O'Neill, a journalist for The Times, said that her GP Dr Lucy Shenton had told the family she had 'never seen anyone so poorly treated by the NHS as Maeve was'.
Ahead of the inquest which started yesterday, Mr O'Neill said he expected questions to be raised about an alleged delay in providing his daughter with palliative care, 'apparently because someone, somewhere in the bureaucracy that developed around her did not believe her illness was real'.
Maeve Boothby O'Neill, 27,was left bedridden and unable to move due to ME. She sent a letter to her GP begging for 'help with feeding' just months before she died at her home in Exeter in October 2021
He told BBC Radio 4's Today programme yesterday: 'I think that there's a lack of specialist provision for care for severe ME.
'We know from admissions, very constructive admissions that the Royal Devon and Exeter Hospital has made, that there is absolutely no specialist service for people with severe ME anywhere in the NHS. There's no guidance for severe ME, no drugs, no treatment, no, just no.'
He also said that it is a 'huge source of bewilderment and disbelief to me that ME can be treated so badly'.
Anthony Hemsley, the medical director of the Royal Devon and Exeter Hospital, said in written evidence disclosed at a pre-inquest review hearing: 'There is a lack of a commissioned specialist service for severe/very severe ME/CFS both locally, regionally and nationally.'
Mr O'Neill said at the time: 'Imagine that this was a different illness. Imagine a hospital saying that it was not commissioned and therefore not resourced to provide inpatient treatment to those with severe cancer, those with severe heart conditions, those with another severe disease. It is difficult to conceive.'
The inquest in Exeter, Devon, heard Ms Boothby O'Neill had been getting weaker since January 2021 and by March could not feed herself.
She was unable to chew and had difficulty drinking as she could not sit up with her mother feeding her through a syringe.
Ms Boothby O'Neill had been suffering from fatigue since the age of 13 which got worse after she completed her A-levels, and she later struggled to maintain 'any normality due to fatigue'.
Sean O'Neill, a journalist for The Times, pictured with her daughter
According to medical notes, by July she was unable to read, watch TV or engage in conversations, having spent the majority of her time horizontal. She was only getting out of bed to use the toilet.
Ms Boothby O'Neill had wanted to be treated at home and 'reluctantly' agreed to hospital admissions.
But despite being admitted three times to the Royal Devon and Exeter Hospital, she was discharged each time and sent home.
The inquest heard yesterday how Ms Boothby O'Neill sent a letteron June 18, 2021, to her GP, Dr Shenton, begging her to 'help me get enough food to live'.
What isMyalgic encephalomyelitis or chronic fatigue syndrome?
It is a long-term condition that can affect different parts of the body.
The most common symptom is extreme tiredness.
The cause of ME/CFS is unknown.
It can affect anyone, including children.
The 4 main symptoms of ME/CFS are:
- Feeling extremely tired all the time (fatigue), which can make daily activities like taking a shower, or going to work or school, difficult
- Sleep problems, including insomnia, sleeping too much, feeling like you have not slept properly and feeling exhausted or stiff when you wake up
- Problems with thinking, concentration and memory (brain fog)
- Symptoms getting worse after physical or mental activity, and possibly taking weeks to get better
The symptoms of ME/CFS are similar to the symptoms of some other illnesses, so it's important to see a GP to get a correct diagnosis.
There's no specific test for ME/CFS, so it's diagnosed based on your symptoms and by ruling out other conditions that could be causing your symptoms.
Source: NHS
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It said: 'Dear Dr Shenton, I know you are doing your best for me but I really need help with feeding. I don't understand why the hospital didn't do anything to help me when I went in. I am hungry. I want to eat.
'I have been unable to sit up or chew since March. The only person helping me eat is my Mum. I cannot get enough calories through a syringe.
'Please help me get enough food to live.'
It was sent around four months before Ms Boothby O'Neill died, the inquest in Exeter, Devon, was told.
Dr Shenton was left devastated by her death and only felt able to provide evidence to the court in written form, the inquest heard.
She had also completed an advanced decisions document about her future treatment if she was unable to communicate her wishes.
In it she wrote: 'I wish to remain at home and be cared for at home in the community. ME/CFS is a diagnosis by elimination, and I have had every test possible all of which, except one, proved negative.
'The positive test was for mitochondrial function in blood (2016). The only recommended and reliable treatment for ME/CFS is complete rest remaining below my anaerobic threshold and pacing every activity.
'I do not seem to have been able to do this despite spending all my time horizontal since January 2021.
'I agree to admission to hospital for treatment only if there are clearly and fully considered reasons ie. hydration and nutrition.
'When I am in hospital, please enable these medications, supplements and dietary needs.
'I have been unable to eat solid food since March 19 2021 having lost the ability to chew.'
Ms Boothby O'Neill saw her GP and a mental health practitioner in September 2021, four weeks before she died, telling them she did not want to die, but there was no treatment for ME and she did not want to prolong the agony.
Her GP said she was 'switched on and thinking clearly' despite her malnutrition, insisting she did not want any more hospital admissions and wanted to save her energy for her family.
Despite being admitted three times to the Royal Devon and Exeter Hospital (pictured),Ms Boothby O'Neill was discharged each time and sent home
Dr Shenton summarised the position and wrote: 'Maeve wishes to live but there is no further treatment for ME.'
How can you treatME/CFS?
While there's currently no cure for ME/CFS, there are treatments that may help you manage the condition and relieve the symptoms.
Treatments include:
- Energy management – where you're given advice about how to make best use of the energy you have without making your symptoms worse
- Cognitive behavioural therapy (CBT)
- Medicine to control symptoms such as pain and sleeping problems
People with ME/CFS will need to adapt their daily routine and pattern of activities on a long-term basis.
Source: NHS
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Her mother Sarah Boothby claimed during an earlier hearing that medical staff were well-intentioned at the hospital where she sought treatment, but 'they could not see what was going on in front of them'.
Ms Boothby O'Neill was admitted three times to the Royal Devon & Exeter hospital in six months, but was said to have refused a fourth admission because she felt there was no prospect of treatment or cure for her condition.
Dr Shenton's colleague, Dr Paul McDermott, told the hearing she 'ticked all the boxes for very severe ME'.
'As GPs we are not experts and we rely on other people to help us out,' he told the coroner.
'We don't have any other patients who have been anywhere as near severe as Maeve.'
He said he was 'slightly shocked' that having admitted her to hospital in March 2021, she was sent home the same day.
Ms Boothby-O'Neill's mother, Sarah Boothby, wrote to the GP practice manager in the April wanting to know what had 'gone badly wrong' with the care of her daughter.
'Since March 10 2021 I have been the only person providing care for a person unable to sit, stand or chew,' she wrote.
'This is a long-term chronic condition without prognosis or treatment protocol. What is the plan for hydration, liquid, nourishment and transfers to a bedside commode in the community?
'You had arranged to speak by phone to me before the pandemic in February 2020. You didn't call as arranged then and when I rang the surgery, they told me you were off sick.
'This case was urgent then and it is very urgent now.'
In a statement Ms Boothby described her daughter as an 'exceptional' child and an A-grade student.
'She loved learning languages, she had a lively and active interest in world affairs. She looked forward to travelling beyond the UK after finishing school,' she said.
'After finishing school, she was too severely affected by ME to go travelling or take up a place at university.'
Mr O'Neill said: 'Maeve was bright, creative, articulate and opinionated.
'She was academically gifted, very articulate, and a challenging debater.
'But I especially wanted it to be remembered that she was a special big sister to Danny and Lily.
'Her death has been hard for Danny and Lily to understand. Illness stopped them knowing her better, but they knew her love and on her death bed she remembered them.'
The inquest continues.
