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‘A Rollercoaster Of Awful Emotions’: Family Speaks Out for NHS Overhaul to Prevent Deaths of Severely Ill ME Patients

Millie McAinsh’s family sought help when the ME sufferer could no longer eat – only for her to to be sectioned

Millie McAinsh before she was diagnosed with M.E.
Millie McAinsh before she was diagnosed with ME. Photo: Millie’s family

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“I feel like I’m going to die”. These were the haunting words of 18-year-old Millie McAinsh, wrongly sectioned and left without care in an NHS hospital.

Before autumn 2019, Millie was a healthy teenager. She loved the performing arts and was excited to attend sixth form and go to university. Then, what started out as a simple virus, became Myalgic Encephalomyletis (ME), and everything changed.

ME – sometimes erroneously referred to as Chronic Fatigue Syndrome – is a multi-system post-viral illness that leaves 25% of its sufferers housebound or bedbound, and 75% unable to work. Its primary symptom is post-exertional malaise – a dramatic increase in neurological and immune symptoms following exertion.

Over the next four years, Millie went from being the “spontaneous and adventurous” person her family knew to being almost entirely bedridden and relying on them for her basic needs.

By last December, Millie was too unwell to feed herself.

In January, she was subsisting on a mainly liquid diet taken through a straw. When this became too difficult, she was admitted to the Royal Lancaster Infirmary.

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Millie’s family hoped it would be a brief stay, simply to have a feeding tube fitted that would allow her adequate nutrition, but she was instead placed under a deprivation of liberty safeguarding (DOLS) order. She was subsequently sectioned under the Mental Health Act. That decision was overturned by an emergency tribunal 12 days later. 

Her mother and primary carer, Lucy Montgomery, has been banned from visiting – leaving Millie at the mercy of tests that she says are causing her daughter to rapidly deteriorate.

“Being banned from the hospital after caring 24/7 at home for Millie was extremely distressing and difficult,” Montgomery told Byline Times. “She trusted and relied on me to help advocate for her needs, and the new environment in hospital was challenging enough without having her main carer and support taken away.”

Due to the severity of her condition, Millie is mostly non-verbal. But during a traumatic procedure in which a tube was wrongly inserted into her lung, she was heard to beg: “Take it [the tube] out. I don’t consent to being touched… I want the tummy [feeding] tube… I want my mummy to decide my medical decisions… I want to go home.”

At the time of writing, no such tube has been fitted, although there are tentative plans for a procedure next week.

Millie. Picture: Supplied by family
Millie in hospital, where her family says her condition has rapidly declined. Photo: Millie’s family

“Millie has declined massively in hospital,” a member of her family who wished to remain anonymous said. “She is now unable to leave her bed at all and has recently said many times that she thinks she is dying and will not live another week.”

This is not an unreasonable fear.  

Despite an estimated 1.2 million people in the UK living with post-viral disease, there is a lack of knowledge within the medical profession regarding how to treat these patients.

In particular, a gap in the care pathway for severe ME patients means that many risk death or the worsening of their condition if they seek hospital care.

In 2021, 27-year-old Maeve Boothby O’Neill died after she became too unwell to take in food and water due to the severity of her ME. She was discharged three times when an NHS hospital allegedly mishandled her care and she died at home in Exeter. 

An inquest into her death is ongoing, but the pre-inquest hearing last November heard written evidence from the medical director of her local hospital trust that there was a dire lack of NHS services for patients with severe ME.

“The trust was not commissioned, and therefore not resourced, to provide inpatient treatment for severe ME,” Dr Anthony Hemsely wrote. “[And there was] no opportunity to refer Maeve to a specialist inpatient centre.

“There is a lack of commissioned specialist services for severe ME, both locally, regionally, and nationally. In order to rectify this situation, action is required at the highest level.”

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The history of ME is long and fraught.

For many years, it was thought to be a psychological phenomenon, but a growing body of biomedical research studies have suggested that this is incorrect. While the National Institute for Health and Care Excellence (NICE) guidelines for ME were updated to reflect this in 2021, the change has been slow to reach general medical practice.

Many doctors and medical professionals still believe that ME is predominantly a psychological or behavioural problem, rather than an illness that can cause death – like those of 21-year-old Merryn Crofts in 2017, and 32-year-old Kara Jane last year. 

Millie’s family are now facing the same struggle to access appropriate care and say they are “emotionally and mentally exhausted”.

“The whole experience is a roller-coaster of awful emotions,” they said. “This has permanently changed us all as people.”

While the inquest into Maeve’s death is scheduled for July, campaigners have written an open letter to the Health and Social Care Secretary, asking for the urgent creation of an NHS protocol for patients with severe ME.

Millie’s family have launched a petition urging the medical team at Royal Lancaster Infirmary to abide by the NICE guidelines, fit Millie with an appropriate feeding tube, and allow her to come home.

Jane McNicholas, chief medical officer at University Hospitals Morecambe Bay NHS Trust, told Byline Times: “Due to the complexities of the case, it would be inappropriate for us to comment except to say that our teams are working hard with relevant specialists to provide the best possible care.”

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