Everyone’s patient but no one’s responsibility

Reflections on the inquest into the death of Maeve Boothby-O’Neill

Warning: this post contains upsetting content, including the death of someone with Very Severe ME and distressing experiences of hospital care. It’s OK to sit this one out if it feels too close to home. 

Over the past few weeks many in the UK and around the world have followed the inquest into the death of Maeve Boothby-O’Neill. Maeve had Very Severe ME and died at home following multiple hospital admissions. 

During the inquest Maeve’s mother described her death as ‘wholly preventable’. Serious questions have been raised relating to her medical care. While the coroner concluded that Maeve died from malnutrition caused by Severe ME, she pointed to ‘lessons learned in the hope future deaths can be prevented’.

Today we’re sharing perspectives from some of those who have followed the inquest.

Maeve too - A response from carers for loved ones with Severe and Very Severe ME

Amongst the hundreds of online observers throughout the two-week inquest was an established group of family carers of people with Severe and Very Severe ME. The resonances between our experiences and those of Maeve and her mother before Maeve’s death are palpable.

The scripts - so familiar. The playbook - the same: deflection, denial, suspicion, pseudo-psychologising, obfuscation, apathy, inaction. Carefully chosen words that blame the patient, blame the carer, pass the buck, seek to discredit or ignore the evidence of the few experts trying desperately to help.  The assumption that someone else in the system must be more knowledgeable or responsible when in reality no one was. 

Maeve was everyone's patient but no one's responsibility. She did not just slip through the cracks, she was plunged into a vast abyss.

Many of our loved ones have also suffered unintentional harm as a result of hospitalisation and a lack of community support, especially for nutrition and hydration. We know all too well that Maeve’s case is far from unique. We are all living similar stories and fear the same tragic ending for our loved ones. People in our group of carers reflected:

“They could have been talking about our loved one with Severe ME.”  

“In hospital admissions, the treatment, behaviour and attitudes have been so damaging that my person with ME will now not agree to hospital admission.” 

“No health care professional we have dealt with had any training about ME.’’ 

That not a single witness from the hospital or Devon County Council had any experience or knowledge of Very Severe ME is one thing; that we heard how no one had received any training about ME since Maeve’s death is quite another, and speaks volumes. 

We heard that the people who should have been helping were still investigating spurious safeguarding concerns until a week before Maeve’s death. Worse still, these investigations prevented Maeve accessing palliative care. Maeve’s father's (rhetorical) question articulated what many of us had already concluded: ‘Did you put suspicion before compassion?’ 

Our conclusion: the NHS and Social Care were not there for Maeve, just as they were not there for Merryn Crofts, Kara Jane Spencer, Sophia Mirza and many more. Nor are they there for our loved ones now.

History has its eyes on this inquest and especially on what happens next. People with ME and their carers are desperately hoping that, in the wake of other tragic systemic failures (the infected blood scandal, the Post Office, Hillsborough), the inquest will help shine a light on decades of injustice.

For many, including Maeve, it is already too late. The inquest and the bravery of Maeve and her family - throughout their darkest moments - must be a watershed, leading to desperately needed change.

It could be one of us next - Becky Williams (doctor and Long Covid patient)

The past two weeks have weighed particularly heavy on my and my loved ones’ hearts.

Maeve endured ME since her early teens. Her health deteriorated so much that she was housebound at 23. She died at the age of 27, when her Very Severe ME meant that she did not have sufficient energy to chew or swallow food. 

Maeve was begging for food. She was denied nutrition via her veins based on disputed claims that they couldn’t create ‘the required sterile conditions’, despite this being something we do for other very sick patients. The only autonomy she had in all of her care was to insist that she died at home.

I am beyond sickened by the lack of interest and compassion from my profession. Although there are some extremely good healthcare professionals fighting our corner, they are struggling to be heard amongst all of the disbelief and scepticism about the seriousness of the disease. 

Post-viral illness has always been around, and we’re going to continue to see more of it following Covid-19. Similar to other chronic conditions, the higher oestrogen levels in the female body mean that younger women are disproportionately affected by conditions like ME and Long Covid. This often isn't taken seriously by doctors or by society at large. 

A consultant described it as ‘unfortunate’ that healthcare staff were unfamiliar with Maeve’s condition. It’s not unfortunate, it’s downright unacceptable. 

I’m sending so much love, strength and support to Maeve’s family and loved ones. Your continued fight and determination to improve care for others in what must be an extremely harrowing time is incredible.

Maeve has been described as intelligent, warm and kind. She was someone who desperately wanted to live, and to live life to the full. This damaging narrative that we’re ‘lazy, anxious and hysterical’ has to change. We would give anything to be able to work, to travel, to live again.

How many more people will we allow to die when they don’t have to? It’s terrifying that it could quite easily be one of us next. 

A revolution in care must be Maeve’s legacy - Karen Hargrave and Emma Gore-Lloyd (co-founders of #ThereForME)

Others have eloquently spoken of the unbearable tragedy surrounding Maeve’s death and the concerns about her care that the inquest has raised. Her parents have described how Maeve wanted to live and how she could have made an extraordinary contribution to the world. Maeve should be remembered not for the disease that led to her death, but for the legacy she leaves behind.

While many will have wished the coroner’s conclusions went further, inquests are a fact-finding exercise and their scope is limited. What is extraordinary about this case is the conversation it has provoked, not just within the ME community but, crucially, extending outside of it. 

The inquest has had media coverage across national outlets, meaning that many in the UK - often for the first time - are learning about this disease, how serious its consequences can be and the barriers patients face in seeking appropriate care. This in itself is a turning point.

Maeve was not one patient falling through the cracks in a system otherwise well-equipped to provide care; she was one of many who have struggled to receive the care they need and deserve. Maeve wrote how she could not ‘adequately describe how frightening it is to discover there are no doctors who can help you, they do not even know what is wrong with you’. Our own research highlights how many other patients - and their carers - feel the same: abandoned, left on their own to manage terrifying symptoms that at their most severe can prove fatal. Promisingly, some are already reporting changes to their care following the inquest.

The government has made positive commitments this week, including that the long-awaited cross-government delivery plan for ME/CFS will be published this winter. While this is later than many were expecting, we hope that the coming months can be used to ensure the plan delivers the transformation in care that patients need. We continue to call on the government to build an NHS that’s #ThereForME and, crucially, to honour Maeve by recognising that a revolution in care must be her legacy.