The NHS is still ignoring cries for help from the family of a woman with severe ME

The family of a woman from Sussex living with severe myalgic encephalomyelitis (ME) has said the NHS still hasn’t responded to their pleas for help, weeks after they contacted it. Karen Gordon is bedbound at home with what the family says is “life-threatening dehydration and malnutrition”. Yet despite this, as well as a petition and media attention, the NHS is failing to act to save her.

Karen Gordon: living with ME since she was 10

Karen 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 their condition worse. This is what Karen is currently experiencing. However, the NHS has repeatedly failed her.

The NHS: worsening Karen’s situation

As the Canary previously reported, Karen has repeatedly had to go into hospital because she cannot eat or drink. However, the Conquest Hospital in St Leonard’s-on-Sea has been making this increasingly impossible for Karen. Due to her ME causing extreme hypersensitivity to noise, she needs a side room when she’s an in-patient. The hospital stopped providing this – but did agree that she could be tube-fed at home.

However, the Conquest Hospital said it could not do this. Bosses told Karen she would have to travel 100 miles to the St Mark’s hospital in London which could arrange it. Again, her ME would make the journey impossible, so Karen said she couldn’t do that either.

So, the hospital refused to help Karen and discharged her. Her family then started a petition, begging people to support Karen and them. 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.

In response to a Canary article on Karen’s plight, East Sussex Healthcare NHS Trust which runs the Conquest Hospital said on 20 September it will:

continue to work to provide care that will deliver the best outcome for our patient.

However, we now know this hasn’t been the case.

Not an isolated case for people with ME

Karen’s family updated her petition on 9 October. They said:

It has been two weeks since we contacted Joe Chadwick-Bell, CEO of East Sussex Healthcare NHS Trust, about Karen’s life-threatening malnutrition and dehydration and about the hospitals not meeting the needs that Karen has because of her very severe M.E. We still have not had a response to our concerns and our request for urgent action.

Karen is continuing to struggle and is still getting thinner and thinner.

To sum up, the Conquest Hospital is doing nothing. This is despite the petition getting nearly 9,000 signatures and media coverage of Karen’s dire situation.

This lack of action and care from the NHS is not an isolated case in terms of ME. The Canary has documented several women who it has treated in a similar way. Moreover, at least anecdotally, people living with ME will tell you that neglect and failure is par for the course when dealing with the NHS.

Karen’s situation in Sussex is extremely concerning – and she needs immediate support to get the NHS to listen. Long term, however, a sea change is needed so the health service never leaves people with ME in these kinds of situations again. When that change will happen, and where it will come from, remains to be seen.

Featured image via Karen Gordon’s family