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Family stages protest outside Lancaster hospital calling for teenager to be allowed home

Millie McAinsh

The worried family of a seriously ill teenager have staged a protest outside a Lancaster hospital calling for her to be allowed to go home.

Millie McAinsh has been in the Royal Lancaster Infirmary since January because she cannot eat, tolerate light or sound and can barely communicate.

Her family believes she has severe myalgic encephalomyelitis (ME, sometimes known as chronic fatigue syndrome, CFS), saying this has been diagnosed by a private doctor.

Her mum Lucy Montgomery and sister Abbie McAinsh, and supporters say she would be better off coming home as the 'stimulating' hospital environment could be making her worse.

LISTEN to Lucy Montgomery, Millie's mum, and Abbie McAinsh, Millie's sister, talking about why they want her to come home

A petition calling for Millie to be able to go home has been signed by over 11,000 people and she has received around 300 cards offering support from all over the world. 

Lucy, Abbie and campaigners were outside the hospital on Tuesday to raise awareness of her situation.

They displayed a banner saying #BringMillieHome.

Millie, 18, from Silverdale (pictured below), first started to experience symptoms in 2019 when she couldn't recover from a flu virus.

She began to feel more and more tired, and was having heart palpitations, but tests came back normal.

Millie was in bed all the time with extreme fatigue, had very high sensitivity to light, touch and sound, and had to wear an eye mask. She was also unable to sit up without feeling pain in her head.

By January 30 of this year, Millie had become so weak that she was unable to take in food or liquid orally.

Due to concerns for her nutrition and her health, she was admitted to hospital to have a feeding tube fitted. Her family hoped her stay would be short, and she could then come home to recuperate.

But Millie has remained in hospital and her mum Lucy said she believes this is not best for her.

"We feel Millie has been in hospital so long that her ME/CFS is deteriorating in this kind of environment which can't provide the quiet, low stimulation environment for someone in this condition," she said.

"We'd like her to go home as soon as possible with a feeding tube that works for her, to recover her energy while we look for people to help, ME specialist doctors, from a home environment, as soon as she can."

Abbie said Millie is "such a spontaneous and adventurous person".

"She's always the person who wants to try something new," she said.

"She absolutely loves performing arts and wanted to learn more about dancing and acting. She's an amazing artist. She's my best friend and we get on so well. When we're together we can never stop laughing."

Myalgic encephalomyelitis, also called chronic fatigue syndrome or ME/CFS, is a long-term condition with a wide range of symptoms. The most common symptom is extreme tiredness.

Abbie and Lucy (pictured below) both thanked their supporters, including the ME community.

"Without the outside team of people on our side, and all the cards they've sent Millie from across the world, I don't think we could have got through this," said Lucy.

"It's been very important to have that outside support in this very difficult situation."

Millie's family were joined outside the RLI on Tuesday by campaign group the Chronic Collaboration. The group was founded in August 2021 to advocate for improved treatment of chronically ill patients including people with ME/CFS.

The Royal Lancaster Infirmary is run by the University Hospitals of Morecambe Bay NHS Foundation Trust.

Beyond Radio asked the Trust if they wished to comment on the situation regarding Millie being discharged from hospital.

Miss Jane McNicholas, Chief Medical Officer, UHMBT, said: "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." 

The Trust isn't commenting further at this stage.

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