A woman living with severe myalgic encephalomyelitis (ME) is being denied appropriate care by an NHS trust. Her and her family fear for her life. This is because her condition is rapidly deteriorating, while a hospital fails to fully support her. However, her story is not the first case where the NHS is catastrophically failing women living with severe ME – and sadly, it’s unlikely to be the last.
Severe ME: an awful disease
Karen Gordon has lived with severe ME for nearly 20 years. It is a chronic systemic neuroimmune disease not dissimilar to Long Covid. You can read more about ME and its symptoms here. Around 25% of people living with the disease are classed as ‘severe’ or ‘very severe’. These people are generally, if not permanently, bedbound; they’re often unable to eat solid food, and sometimes barely able to communicate.
This is what Karen’s life is like. As a petition her family set up for her notes:
Karen is totally bed bound and cannot eat or drink.
The ME causes many symptoms including generalised pain, abdominal pain, headache, nausea and vomiting, fatigue, and hypersensitivity to sensory stimuli including, light and noise. She has to keep her eyes covered…
Karen has had ME since she was 10 years old. She has been tube fed for 19 years mostly at home. In the last two years her ME health has become worse, causing more severe nausea and vomiting and severe abdominal pain leading to more feeding and nutritional difficulties.
Medical professionals generally think there is no known cure for ME. Around 6% of patients have recovered from the disease – but otherwise, doctors often leave people without adequate support or care – actively making people’s condition worse. This is what Karen is currently experiencing.
Currently, Karen is at home. However, in recent years she has been hospitalised because of being unable to eat or drink. She needed intravenous (IV) total parenteral nutrition (TPN). This is where doctors give patients fluids and nutrition via an IV line, directly into a large vein near their heart. However, Karen’s experience of being in the Conquest Hospital, St Leonard’s-on-Sea, has been appalling.
At first, doctors gave her a side room to herself. This was because National Institute for Clinical Excellence (NICE) guidelines, as well as Karen’s consultants, recommended it. However, the Conquest Hospital has now withdrawn the room.
Being in hospital is a distressing and debilitating experience for Karen. As her family state:
Being in a 6-bedded bay is very unsuitable for Karen and causes an increase in symptoms, unnecessary suffering, deterioration of the ME and It can cause a relapse of the ME and it is life-threatening. The sensory stimuli and busyness around her in a bay are overwhelming and exhausting for Karen and cause her more severe pain. Rest and sleep are particularly important for people with ME and they are needed for energy management… In a bay, Karen gets hardly any sleep or rest due to the disturbance.
So the NHS, Karen, and her family agreed that she should have IV TPN at home. However, the Conquest Hospital said it cannot provide this. It told Karen she would have to go to St Mark’s hospital in London, 100 miles away, and stay there for 6-8 weeks. Doctors would have to assess her before they could start home IV TPN.
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 alterative” it could “offer”.
Dying at home with no support
Karen is now at home with no access to IV fluids. In short, her and her family believe she is dying. On 14 September, her family noted that:
Two tests in the last month have shown that Karen is dehydrated. But she has not even been given a few days of I/V fluid at home to help her during this time by the Urgent Community Response / Virtual Ward teams.
They believe she is:
suffering from life threatening dehydration and malnutrition. She has lost a lot of weight. She is getting thinner and thinner. Karen is scared that she is going to die from dehydration and malnutrition. Karen does not want to die.
Karen needs the East Sussex Healthcare NHS Trust to provide I/V feeding (TPN) and I/V fluid at home without delay.
A spokesperson for East Sussex Healthcare NHS Trust, which runs the Conquest Hospital, told the Canary:
Patients with ME have a range of needs that often require complex multidisciplinary care. All treatment that we provide to patients who have ME is as closely in line with NICE guidance as possible, and ensuring that they have the best clinical care and experience the best possible clinical outcomes remains our highest priority. We continue to work to provide care that will deliver the best outcome for our patient.
While the trust obviously cannot comment on people’s private medical details, this is still a non-response. It provides no explanation as to why the Conquest Hospital won’t provide IV TPN at home – when countless NHS trusts do this as standard. Moreover, during the coronavirus (Covid-19) pandemic, IV TPN was maintained across the entire NHS. Plus, East Sussex Healthcare NHS Trust’s own guidance states that IV TPN can be done at home, noting that:
Once your line is in place and its position is confirmed your treatment can commence right away. If you are going home, you will be given an information booklet to keep which has information for you and the Health Care Professionals that will be delivering your treatment and changing your dressings whilst in the community.
Karen’s situation is desperate. However, she is not the first person living with ME to experience this.
The NHS is systemically failing ME patients
Sami Berry is one such patient. In February 2023, she could not eat, and her body was struggling to get nutrition even through a feeding tube. However, the NHS hospital responsible for her care was refusing to give Sami the right medication to help with this. Her consultant even said he wouldn’t necessarily listen to the advice of ME specialists.
Eventually, the NHS did start to treat Sami properly – however even to this day, she is still struggling to get adequate care. For example, her GP surgery recently kicked her off its books after she told them she was going to make a formal complaint about its care.
Alice Barrett is another such patient. The NHS hospital she was at was forcing her to be tube-fed at an angle of 30°. However, Alice’s family said she could not tolerate this due to her illnesses. Eventually, the hospital agreed to change this – reducing the angle she was fed at.
However, the improvement in Alice’s care only came after a campaign caused media attention about her story.
Sami and Alice are just two examples of countless people with ME who the NHS is failing. In the past year, at least two people have died. As the Canary previously wrote:
Anna Fitzgerald-Clark died on Christmas Day 2022. She lived with severe ME, but little information exists online about her. She does have a page where people can donate to charity Action for ME – here.
Then, just after New Year’s 2023, Kara Jane Spencer also died. She was a talented singer-songwriter, who recorded an album to raise money for ME research.
All this is despite NICE updating its treatment guidelines in 2021 – but that only happened after a concerted campaign by patients, advocates, and charities.
When will change actually happen?
Karen’s situation is just one example of how the NHS often treats people living with ME. For decades – thanks to medical professionals and researchers’ psychologisation of the disease – health services have neglected, mistreated, and gaslighted patients.
NICE updated its guidelines in 2021 to remove harmful and ineffective treatments – those pushed by the same professionals who psychologise the illness. Many people hoped this would be a watershed moment for the community. They hoped patients would start to get the recognition, validation, and support they desperately needed. Sadly, and somewhat predictably, this hasn’t been the case.
The government is currently running a consultation on how public services treat people with ME, their families, and carers. But given its current campaign against chronically ill and disabled people who are reliant on social security, it’s unlikely that anything coming from the government will bring about meaningful change for people living with ME, either.
Change will only come about for the ME community from the bottom up. It won’t come in the form of guidelines for medical professionals. Nor will it look like a government consultation. It is unlikely to come directly from charities, either. Change will come from people living with ME, their advocates, and campaigners forcing the government, institutions, and medical professionals to take notice and fix up.
Featured image via Karen Gordon’s family – change.org
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