Millie McAinsh is 18 years old and has very Severe Myalgic Encephalomyelitis (ME/CFS).
A petition for better and more adequate treatment at the Infirmary she still is ebing forced to stay, has been started and can be signed here.
Over 11.500 persons already did.
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. 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.
The Royal Lancaster Infirmary is part of the University Hospitals of Morecambe Bay NHS Foundation Trust. Some staff at the hospital have stated that they don’t believe or take seriously ME symptoms and are speculating that it is a mental illness/eating disorder, even though it is stated by WHO and NICE that ME is a physical and complex neurological illness.
Millie agreed to come into the Royal Lancaster Infirmary on 30th January 2024 after 4 paramedics carefully helped her down from her bedroom in a scoop to the ambulance. She and her family were hoping that the stay would be short and a feeding tube given as soon as possible and to get Millie back home where she is able to manage her sensory hypersensitivity well.
Since Mille has been in hospital, it has become very clear that the hospital environment is making Millie’s severe ME so much worse, due to the stimulating environment, all the tests and the complete lack of understanding of severe ME, and horrifically the hospital has made the unacceptable decision of sectioning Millie.
The hospital has stated that Millie has to be between 25 – 45 degrees for NG tube feeding. Millie cannot tolerate this due to her severe POTs and feels like she is being tortured. These guidelines are based on stroke patients and are not relevant to ME patients.
“Take it out. I don’t consent to being touched…”
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.”
We realised after a day or so that the only type of feeding tube she could go home with in our area was a PEG tube so Millie agreed and asked for this and to go home as soon as possible.
The GMC states the patient has a right to a second opinion of their choice. ME experts have contacted the hospital to explain a best treatment for Mille including a PEG tube, being fed at 5 degrees, and being released home into a quiet environment as soon as possible – this has all been ignored which is going to have long term detrimental effect on Millie, if not terminal. Millie has repeatedly been given inappropriate treatment and abuse that is negatively life altering and potentially life threatening since being in hospital.
In addition, the hospital has limited Millie’s family in the hospital (especially her Mum, Millie’s main support and carer) so Millie cannot receive the correct and safe care and advocacy needed for a severe ME patient.
Dr. William Weir intervening
On 26th February Dr. William Weir visited the Lancaster Royal Infirmary to provide a 2nd opinion on Millie McAinsh.
On 10th March Millie had been in the hospital for almost 6 weeks and was reported to continue to decline. She was still being fed by an NG tube with which she can’t be provided in the region she’s living. Her care was still not being paced. It has been suggested that she doesn’t have an ME/CFS idagnosis, so the hospital does not feel compelled to follow the NICE-guidelines 2021 for ME.
On 15th March Dr Weir sent a very clear letter stating that Millie’s diagnoses is ME/CFS and for this to be added to her medical records.
A moving reportage about Millie appeared on 19th March in Byline Times. 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.”
Source (partially): petition Save Millie’s life – Royal Lancaster Infirmary must STOP causing Millie harm
See also the article on Save4Children in this issue of the ME Global Chronicle
The ME Global Chronicle 