**Trigger Warning: Upsetting Content**
Listen to Sean O'Neill (senior writer for the Times) talk to Emma Barnett (Radio Presenter on the Today Programme) about his daughter Maeve Boothby-O'Neill ahead of the inquest into her death on Monday 22nd of July. This moving interview highlights the lack of understanding surrounding ME/CFS and the need to improve care for patients with this debilitating disease.
BBC Radio 4, Today Programme (20.07.24)
Transcript
Emma Barnett: Now my next guest, the Times journalist, Sean O'Neill, has been waiting nearly three years for the inquest into the death of his daughter to start, and finally it begins on Monday. He's hoping that it will change how those suffering with ME are treated by medical professionals. His daughter Maeve Boothby O'Neill died aged 27 in October 2021.
She had been ill for years with ME, a poorly understood and debilitating disease regularly characterised as a psychological one, as opposed to a potentially life- threatening illness. Maeve's condition deteriorated sharply in the last seven months of her life. She was bed bound and the act of chewing was too exhausting for her and she was becoming malnourished.
She had three admissions at the Royal Devon and Exeter Hospital and the inquest is required to examine some of its clinical decisions including the refusal to offer certain procedures. Sean O'Neill, Good morning.
Sean O'Neill: Good morning Emma.
Emma Barnett: It's been a long time coming and it's not going to be easy, I'm sure, for you and your family, but what are you trying to achieve?
Sean O'Neill: I think, um, my ambitions are quite limited. I mean, what, what I really crave and what I really want is obviously impossible because no inquest can bring Maeve back to life. But what I want and what I've realised through this process is how difficult it is for ME patients to be recognised and accepted as patients with a serious physical illness.
There's a real kind of obstacle or obstruction within the medical profession to accepting that ME is genuinely a physical illness. And that culture of disbelief of stigmatisation of patients, it's really, really harmful, I think, for hundreds of thousands of people.
Emma Barnett: I mean, it's also worth saying it's an illness that predominantly affects women.
And we know more and more about women being dismissed within health services as perhaps being difficult, not taken seriously. But we also know that there are doctors who will recognise ME, but they find what they can offer very limited because the research is the way it is. I mean, looking at the ME Association, its website says no effective drug treatment, but symptoms can be improved with specialist support.
Sean O'Neill: There's a real problem in four areas. I think there's belief, there's a lack of specialist provision. For, uh, care for, um, 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 or the private sector.
There's no guidance for severe ME, no drugs, no treatment, just no, I mean, you can't imagine saying that of any other illness, you know, a severe illness that the medical profession in this country is not equipped in any way to treat. And I say this as someone who benefits from medical expertise.
I have cancer and I've been kept well and alive for 15 years by incredible drugs and incredible doctors. And it's a huge source of bewilderment and disbelief to me that ME can be treated so badly.
Emma Barnett: A Department of Health and Social Care statement has said this government will ensure patients receive the care they deserve.
We're committed to improving the care and support for people with ME. And Dr. Anthony Hemsley, the medical director of the hospital, the NHS Royal Devon and Exeter Hospital, has said at a pre inquest hearing there's a lack of commissioned, specialist service for severe or very severe ME regionally and nationally.
And this gap has been confirmed by local integrated care board reports in order to rectify this action is required at the highest level. But I suppose that's that bigger picture that you're trying to look at now. What happened to Maeve in terms of, I mentioned some of what started to happen and how old was she when she developed symptoms?
Sean O'Neill: I first, um, thought something was wrong when she was about 12 or 13. Um, uh, I picked her up from school one day. She and her mother and I are divorced. And so it was a weekend visit. I came to pick her up from school and she'd fainted while I had cross country running. And those kinds of symptoms of dizziness and, and, uh, and it's sort of tiredness, uh, kept going for many years. She wasn't diagnosed fully with ME until she was 18. And again, that's, there's no blood test or anything. There's people with ME, blood test is normal, but they're clearly having terrible symptoms. So it's a diagnosis by elimination. And from 18, after she, did her A levels, which she did really well, she should have been going on to university, but she felt she wasn't physically able to.
So she stayed home, uh, to try and rest and recover and pace her energy. But her M. E. just got worse and worse. She would sort of plateau and then get worse and then plateau and get worse again.
Emma Barnett: And what does that mean, get worse?
Sean O'Neill: Well, it, there would just be, she just became increasingly housebound and you know, her energy envelope, if you like, became smaller and smaller, what she was actually physically able to achieve.
So she paced herself very carefully. I mean, she did amazing things. You know, my other kids got the most amazing presents from her. She'd design and knit. jumpers for them and she wrote the first draft of a very quirky crime novel set on Dartmoor in the 1920s and it's a wonderful thing to read but, you know, she should be she should be turning 30 next month and should be doing something amazing in the world, but she's gone
Emma Barnett: And with you trying to do this, I suppose you're trying to prevent anyone else being in that situation
Sean O'Neill: To be honest Emma I'm doing this too late, you know, I've come to this whole subject too late.
I, since I started writing about this in 2020, I've been absolutely amazed at the number of people who have, you know, there's a very toxic debate about ME online, but the people who contacted me are just ordinary families who are pursued by education authorities and social services accused of fabricating illnesses, just persecuted in a way by the system when they should be shown compassion and love and support.
Emma Barnett: Well, the inquest begins tomorrow. Sean O'Neill, I'm sure we'll hear from many people this morning. Thank you for coming on to the program.
Medical Coverage
- The Times: Sajid Javid: Labour must deliver on ME as patients suffer without a cure | 19th July 2024 (paywalled)
- The Times: Sean O'Neill: ‘My child died of ME’: a scandal waiting for its Post Office moment | 19th July 2024 (paywalled)
- The Telegraph: NHS treatment for ME patients to be examined | 19th July 2024 (paywalled)
- MSN News: NHS treatment for ME patients to be examined | 19th July 2024
- Times Radio: Alexis Conran reports on the inquest of Maeve Boothby-O’Neill due start on Monday 22nd of July (starts around 30mins) | 20th July 2024
- The Telegraph: NHS has no specialist service for ME sufferers, says grieving father | 21st July 2024 (paywalled)