A young woman living with severe myalgic encephalomyelitis (ME) is being catastrophically neglected by an NHS hospital. Millie’s story in itself is shocking. Medical professionals appear to be ignoring official guidelines into the disease – going so far as to section her under the Mental Health Act, and limiting her mother’s visiting rights.
There is a petition people can sign calling on the NHS to act. You can sign it here.
However, Millie’s situation is made all the worse when you realise that she is at least the third woman the NHS has treated like this in the last month alone. Moreover, across the health service there have been multiple cases of this nature in the past year.
It shows the NHS has a systemic problem when it comes to treating chronically ill people – and at times, it is little more than a threat to their lives.
What is ME?
ME is a chronic disease that affects almost every system in people’s bodies – like the immune, nervous, digestive, and hormonal systems. Many of its symptoms majorly impact a patient’s day-to-day life – like cognitive impairment, profound and disabling fatigue, influenza-like symptoms, heart, lung, temperature, and blood pressure dysfunction, hypersensitivities, and digestive dysfunction.
However, the main symptom which sets ME aside from other illnesses is called post-exertional malaise (PEM), the NHS Scotland website says. Oddly, NHS England’s website makes no mention of this. PEM is a worsening of many, if not all, the body’s systems, as well as symptoms, after physical, mental, or emotional exertion.
Research has shown people with ME have a worse quality of life than many cancer patients, people living with type I diabetes, and stroke survivors.
Severe ME
In its worst form, people with severe or very severe ME often cannot eat or drink, are permanently bedbound or hospitalised, cannot sit or stand up, and are completely reliant on others for their care. However, crucially ME can kill people – and has.
In 2021, Maeve Boothby O’Neill died from very severe ME at the age of 27 after the NHS allegedly neglected her. Doctors denied her a feeding tube, and later denied total parenteral nutrition, which could have saved her life. An inquest into Maeve’s case is ongoing. Her father, journalist Sean O’Neill, wrote about his daughter’s story for the Times.
Now, the NHS is neglecting yet another severe ME patient.
Millie: at severe risk under the NHS
Millie is 18 years old and lives with severe ME. As the petition for her states:
She is currently in The Royal Lancaster Infirmary 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 Millie has been in hospital, it has become very clear that that 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.
Repeatedly given inappropriate treatment
The petition continued:
The hospital has stated that Millie has to be between 25 – 35 degrees for NG [nasogastric] tube feeding. Millie cannot tolerate this due to her severe POTS [postural orthostatic tachycardia syndrome] and feels like she is being tortured. These guidelines are based on stroke patients and are not relevant to ME patients.
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 [percutaneous endoscopic gastrostomy] tube so Millie agreed and asked for this and to home as soon as possible [this is tube feeding straight into the stomach].
The GMC states the patient has a right to a second opinion of their choice.
ME experts ignored
The petition also said:
ME experts have contacted the hospital to explain a best treatment for Millie 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.
Sadly, Millie is not the first patient the NHS has treated like this. She is the third case that has come to light this month alone, where the health service is, at best, severely neglecting ME patients – and at worst, abusing them and putting their lives at risk. Moreover, there have been numerous cases more in the past year.
Karen Gordon – another day, another abused patient
As the Canary previously reported, Karen Gordon was left in a similar position under the Conquest Hospital in St Leonard’s-on-Sea. It failed to follow NICE guidelines around severe ME patient’s needs, and also refused her intravenous (IV) total parenteral nutrition (TPN) – telling her she would have to go 100 miles to St Mark’s hospital in London for this.
However, this was completely unsuitable for Karen – and littered with problems:
- The journey would be detrimental to her health.
- St Mark’s would not give her a side room.
- The hospital wouldn’t let Karen’s mother, who is her full-time carer, stay with her 24/7.
So, Karen refused the referral – and as a result, the Conquest Hospital discharged her. It said there was “no alternative” it could “offer”.
Threatened with the Court of Protection
As of 14 February as the petition for Karen stated, East Sussex Healthcare NHS Trust is still saying Karen must go to St Mark’s. Disturbingly:
Karen was told… that if she does not agree very soon to go to St Mark’s then ESHT might take legal action, might say she has to have another capacity assessment and that her case might go to the Court of Protection. Karen has already been formally assessed as having capacity twice in the last 18 months.
Karen is horrified at the threat of legal action being taken against her. She is very stressed.
In short, the NHS systematically ignores NICE guidelines around ME and severe ME – as Millie and Karen’s experiences show.
University Hospitals Of Morecambe Bay NHS Trust says…
The Canary contacted University Hospitals Of Morecambe Bay NHS Trust for comment on Millie’s case. Specifically, we wanted to know why doctors are ignoring NICE guidelines on severe ME and treating her illness as psychological – when NICE guidelines are very clear that this must not be done. We also asked why the hospital has refused access for Millie’s mother.
Jane McNicholas, chief medical officer at the Trust, 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.
Why is nothing changing?
Millie and Karen’s stories are not unusual. In 2023, the situations for people such as Sami Berry and Alice Barrett – both living with ME, and both being dangerously neglected by the NHS – prompted widespread media coverage, and a protest outside parliament by campaign group the Chronic Collaboration.
It and social enterprise ME Foggy Dog drafted guidance for MPs to be able to intervene in patient’s cases. Then, ME Foggy Dog also wrote an open letter to the health secretary demanding action on severe ME. You can read and sign the letter here.
Yet nothing has changed within the NHS. Our supposedly world-beating, world-renowned, free-at-the-point-of-use health service is nothing but a threat and menace to countless chronically ill and disabled people.
More people will die
All this is against a backdrop of severe ME patients like Merryn Crofts and Maeve – both of whom died, and for whom the NHS both denied adequate tube-based feeding.
Moreover, ME has recently once again been completely misrepresented on television thanks to the Acu Seeds/Dragon’s Den scandal. Then, much of the media coverage on this also misrepresented the illness. There has been a glimmer of hope with a positive segment on Channel 4 News on Monday 19 February. However, it sadly will not be enough.
As the Canary previously wrote, the entire NHS may well need structural reform. However, that will do little to change the situation for chronically ill people when the notion of psychosomatic illness pervades medical professionals’ thinking.
That conversation is for another day, though. For now, Millie urgently needs an intervention to prevent doctors’ malpractice making her situation any worse – and potentially life-threatening.
Featured image supplied
By Steve Topple
This post was originally published on Canary.
