Family stage protest outside Lancaster hospital over medical treatment of 18-year-old girl

Andy Bonner went to speak to Millie's family to find out why they think home is the best place for her.

The family of an 18-year-old girl thought to be living with ME have been joined by campaigners to protest outside of the hospital over her medical treatment from doctors.

Millie McAinsh has been at the Royal Lancaster Infirmary since January 2024 after she became unable to eat, speak, or swallow due to what her family believes is ME - or myalgic encephalomyelitis.

While her condition has improved in some ways, Millie and her family now believe home is the best place for her.

To draw attention to her cause Millie's family and a group of campaigners from The Chronic Collaboration staged a protest outside of the hospital calling on her medical team to let her continue treatment from home.

Her family say she has been living with ME for years, and a private doctor has diagnosed Millie with the condition.

Millie's family say she has been living with ME since she was 14. Credit: Family handout

Her mother, Lucy Montgomery, said: "Millie's ME started around 2019. That's when she started declining.

"But last summer she just started to get much, much worse. She was in bed a lot and we were starting to get really worried.

"Then by the end of last year she was finding it hard to have the energy to eat a full meal."

ME - also known as chronic fatigue syndrome - is defined as a serious, multi-system disease that impacts a person's physical ability and quality of life.

In severe cases, it can be fatal. There is no specific test available to diagnose the condition.

Instead, a diagnosis is given based on symptoms and ruling out other causes, which can take years.

As Millie's condition got worse, she became unable to eat and was brought into hospital to be placed on a feeding tube.

Millie's sister, Abbie McAinsh, said: "Millie thought the hospital would be a good idea because she has so much faith in medical professionals and really hoped they would be the ones to help her."

As Millie's condition deteriorated, she became sensitive to lights and sound. Credit: Family handout

However, Millie's family believe it took doctors too long to find suitable treatment for her.

Abbie said: "They don't have any protocols in place. Like if you go into hospital with a heart attack they straightaway know what to do with you.

"However if you're going into hospital with ME, they've got to research it, look it up, call clinicians."

Ten weeks into her treatment, Millie's family believe the treatments being offered to Millie are actively harming her.

According to Mayo Clinic, repeated exposure to sensory stressors such as light and touch can push people with ME into a state of sheer exhaustion

Millie's family believe the hospital environment is making her condition worse, and are calling on her medical team to let her recover at home with the feeding tube.

Millie's family joined a protest calling on the hospital to provide her with a feeding tube at home.

Her mother said: "She's been saying 'I need to go home. This environment in the hospital is too much for me, it's making me deteriorate because of the stimulation.'

"She just needs to go home where it's quieter and warmer."

While home feeding tubes are available in certain parts of the country, the Royal Lancaster Hospital no longer provides them to patients and have refused to discharge her.

Outside the hospital, her family joined a protest to ask the hospital to listen to their pleas - before Millie gets any worse.

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."

Want a quick and expert briefing on the biggest news stories? Listen to our latest podcasts to find out What You Need To know...