**Trigger Warning: Upsetting content**
Channel 4 News
Video Transcripts:
Channel 4 News presenter Krishnan Guru-Murthy (KGM) reports on the conclusion of the inquest, and the broadcast shares interviews with Sarah Boothby (SB) Maeve's Mum and Sean O'Neill (SO'N) Maeve's Dad
Sarah Boothby's garden is her sanctuary. It was a sanctuary her daughter Maeve became too ill to share. Bedbound and unable to eat, her mother cared for her right to the very end.
SB] “She didn't have the energy to feed herself; she didn't have the energy to sit up; she couldn't chew – she didn't have the energy to chew.”
Q] “Do you think she knew she was dying?”
SB] “She knew she was at risk of death – she definitely knew she was dying when they wouldn't help her.
Video Narrator: Wouldn't or couldn't?”
Maeve Boothby O'Neill was a healthy child but she started to suffer from M.E. symptoms as a teenager. Her condition rapidly deteriorated in her mid-20s and she died at the age of 27.
The inquest into her death heard evidence about a culture of disbelief amongst some of those who treated her, and a lack of expertise.
In an email two days before she died, her GP – referring to nurses – wrote “it seems to take a variable amount of time for the penny to drop that this is M.E. It can take months or not at all”.
An ME expert told the inquest he had written to the chief executive of the hospital in Exeter where Maeve had been admitted and discharged on three occasions, warning “her illness was regarded by some as her fault and that her immobility was self-inflicted”.
But perhaps the most telling evidence was from the medical director of the local NHS trust who wrote, “there's a lack of a commissioned specialist service for severe / very severe M.E. / Chronic Fatigue Syndrome, both locally regionally and nationally. In order to rectify this situation, action is required at the highest level”.
SB] “When I read that statement… I felt a moment of relief. I'm probably going to cry now because one of worst things about Maeve dying so young and wanting to contribute to the world – and she always wanted to – is that I thought at least her death won't have been in vain – that there would have been something good come out of it – because in his statement, he says what we already knew and what we were trying to overcome and failed to overcome, and he acknowledged that it is a failure… it is a failure in the Health Service and it's at every level. It's not just – …it's absolutely not just to do with the one hospital.”
Video Narrator: Maeve's father Sean O'Neal, like her mother, wanted his daughter to be artificially fed. She was eventually fitted with a tube through her nose in hospital but it was removed due to complications.
“Another form of feeding, through a vein, was said to be too dangerous,” Maeve's mother told the inquest. “Her death was wholly preventable and staff had failed in their duty of care.”
But a lawyer for the hospital said the trust did not accept that Maeve's death was preventable or that opportunities were missed.
That position was backed up by the coroner today. She said all the clinicians who gave evidence did believe that M.E. was a true illness. She described them as open-minded and respectful. She said Maeve had died from malnutrition caused by severe M.E. and that doctors had been unable to treat the consequences of such a severe disease – a disease that there is still no cure for.
SO’N] I'm really pleased that she has concluded that may have died from malnutrition caused by severe M.E. – it's very rare to get M.E. on a death certificate – but also pleased that she signalled to the hospital, and I think the wider NHS, that she wants to see improvements in care and treatment of M.E. patients in the future.
In a statement the local NHS trust said “everybody involved in caring for Maeve has been profoundly impacted. We've learned from Maeve's case and strengthened the information available to staff caring for patients with severe M.E.”
Maeve never got to walk across her beloved Dartmoor again. She died at home – her mother unable to hug her because it was too painful to be touched. Aware she was dying, she made one last plea writing, “my only hope lies in biomedical research and adequate funding”, and she called on the medical establishment to set aside the inaccurate idea that behavioural treatments can cure M.E.
Interview with co-founder of #ThereforME initiative Karen Hargrave (KH).
Krishnan Guru-Murthy] Jane George reporting. Today the Department of Health and Social Care said that they would publish a plan this winter to help boost research and better the lives of people with M.E.
Earlier, I spoke to Karen Hargrave who launched a campaign to lobby for better care for people with the condition after her husband's life was decimated by the disease. She is also an M.E. sufferer, and I started by asking her what her reaction was to the inquest?
KH] I'd say that I know there are lots of us who've been following this at home, people who are carers or who care for people with M.E. or Long Covid, or who have M.E. or Long Covid themselves, and I'd say that I think there's a lot of disappointment around that we were hoping the conclusions would go a little bit further, but there's still more to come in September so I guess we'll see what happens with that. But this has never really been, I think, about just one inquest or about just one patient, and , what's been remarkable – whatever the conclusions of this inquest is – how it's sort of sparked this conversation really about ME and the number of people who've been following it from home who've heard things in the inquest – testimony about M.E. not being believed or being dismissed or not being taken seriously, and people saying, “oh that resonates with my experience too” – like – “this is… what I've been through”. Whatever the conclusions, that the conversation that this has sparked can still be a turning point in improving care for people with M.E.
KGM] I mean what do you really want? Is it the way you're treated in the system that is the real thing that you want tackling immediately?
KH] I mean I think there's so many different parts to it. What we're doing is we're asking for at least 100 million pounds of annual biomedical funding for Research into M.E., and we're asking for that funding to be ring-fenced to make sure that that funding is delivered … We are calling for a commitment to a transformation in care for people with M.E. and for people with Long Covid, because, from what we know, around 50% of people with Long Covid meet the criteria for M.E. as well.
KGM] You have M.E. and your husband also has M.E. – by the sound of it in a much more severe way. I mean, can you give us a sense of how this disease has affected you both, because obviously some people are going to watch this and go, “well she looks all right to me”?
KH] Yeah – and I think that… I think appearances can be very deceptive. We both developed M.E. as a result of Long Covid, and I got sick first – right at the start of the pandemic, and I was really unwell for a couple of years – sort of mostly housebound / couldn't work, and then I had this sort of quite dramatic Improvement. But what I always say to people is that the way that M.E. affects you – it's… it's what you can't see compared to what you can see. Because, you know, if I'm… when I'm at work – I work part-time now – when I'm talking to you, I look well, I look functional. But tomorrow I'm probably going to have to spend all day in bed lying down, because I've been doing a couple of media interviews today. So, every single thing when you have M.E. comes at a cost and you kind of have to constantly make those assessments. But for James my husband, who has been diagnosed with very severe M.E. – he had a very severe and quite sudden deterioration at the beginning of last year. So at the moment he's almost completely bedbound. He can sort of get out of bed once a day to go to the bathroom. He has these very, very severe cognitive difficulties. It's so bad for him that he can't, you know… we can't have a conversation. He's not able to do the cognitive exertion that's involved in having a conversation. Like other patients with the most severe forms of M.E., he's now… (um) he has difficulty with chewing and with swallowing, so that means that basically every single day is a struggle to make sure that we're getting (you know) the right nutrition – the right hydration into him – basically, to be keeping him alive.
KGM] That must make it very difficult to engage with doctors about what he needs and what he's able to do?
KH] We've had lots of different GPS so we've had lots of different attitudes, but our current GP is wonderful and they do really listen to and empathize with us. But I think the difficulty is that there's just so little real understanding of M.E. in the NHS, so pretty much every single – well almost every single interaction I have with a healthcare worker, I basically have to explain what M.E. is and what very severe M.E. looks like and what that means for James. So I'm kind of having to go into every single one of those conversations explaining that to the healthcare professional – which is just as a carer. It's just exhausting – it's (you know) every single appointment. You just… you dread it because it's an exhausting thing to have to do every single time.
KGM] Well Karen, thank you very much indeed.
And if you've been affected by any of the issues raised in that report there's a range of places to seek help on channel4.com support.
Further information about #ThereForME
- Building an NHS that’s there for people with Long Covid and ME | 23 July 2024
- Linktree @ThereForME
Further media coverage of the coroner's conclusion
- BBC News: Woman died from malnutrition due to ME – coroner | 9th August 2024
- ITV News: Maeve Boothby-O'Neill inquest: Woman died from malnutrition due to ME, coroner finds | 9th August 2024
- The Standard: Woman died from malnutrition due to ME, coroner finds | 9th August 2024
- The Guardian: Devon woman died from malnutrition due to severe ME, coroner concludes | 9th August 2024