A woman with severe myalgic encephalomyelitis (ME) has spoken out – from her hospital bed – about the NHS’s continued refusal to provide her with vital and appropriate care. She has now been in hospital now for a year and two months – and in that time, has only gotten worse. On top of this, now, the hospital is withdrawing basic accommodations her family fought for them to implement. Crucially, these are essential to reduce the impact of hospital environment on her deteriorating health.
All this is happening despite a long-running petition signed by more than 18,000 people and significant media coverage of her story. It’s yet another damning indictment of the atrocious state of NHS care for people living with ME.
Karen Gordon: severe ME patient battling for care
The Canary has previously reported on the appalling failures by the NHS to save severe ME patient Karen Gordon.
ME is a chronic systemic neuroimmune disease which affects nearly every system in the body. It causes debilitating symptoms – which you can read more about here.
At least 25% of people live with severe ME. In these cases, people living severe ME are mostly, if not entirely permanently bed-bound or hospitalised. On top of this, they are often unable to digest food, communicate, or process information and are fully dependent on others for their care.
For 28 years now, this is what Karen has lived with. As the petition her family set up for her details:
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, noise and smell. She has to keep her eyes covered.
Karen is intelligent and has many interests. She enjoys receiving cards and letters. When she is at home she loves spending time with her cat and enjoys other things including having things such as some newspaper articles and updates from some of the many animal charities that she supports read to her a bit at a time when she is able.
Karen has had ME since she was 10 years old. She has been tube fed for 20 years mostly at home. Since June 2021 her ME health has become worse, causing more severe nausea and vomiting and severe abdominal pain leading to more feeding and nutritional difficulties.
And since 2023, Karen and her family have been in a protracted battle with their local NHS trust and hospital over her care.
The NHS: failing Karen from the start
The Canary’s Steve Topple first highlighted Karen’s deteriorating condition at the hands of East Sussex Healthcare NHS Trust in September 2023. At the time, he wrote how:
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.
This appalling care only continued, with the hospital and NHS Trust ignoring her family’s pleas for help. After initially agreeing she could be tube-fed at home, Conquest hospital then backtracked, before discharging her.
As a result, her family voiced Karen’s fear that she was dying from dehydration and malnutrition. To make matters worse, the Trust told her she would have to go 100 miles to St Mark’s Hospital in London for intravenous (IV) total parenteral nutrition (TPN) instead. However, this is entirely inappropriate for someone with severe ME and as Topple explained, brought up a number of serious problems – namely that:
- 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”.
Karen had returned to Conquest Hospital in January 2024 – where she has continued to receive inadequate and inappropriate care.
What’s more, East Sussex Healthcare Trust have repeatedly threatened Karen with legal action, and weaponisation of mental health capacity assessment, or the Court of Protection to initiate a Deprivation of Liberty order against Karen. Specifically, it has done so on a number of occasions to attempt to force her to the hospital. For instance, the Canary wrote about it doing so in April 2024.
NHS ignoring patient consent, refusing vital care
Since then, things haven’t gotten better. In all this time, the Trust still hasn’t set up IV TPN for Karen at home – and now another hospital involved in her care has also explicitly refused it.
Previously, a consultant at St Mark’s had suggested that Karen get a second opinion on having it set up at home from University College London Hospital (UCLH).
In early November 2024, Karen agreed to this, on the condition she would be given the time to read the referral and discuss adjustments to it before her consultants at Conquest Hospital sent it.
This is not what happened. Instead, on 19 November, they found out Conquest Hospital had sent the letter without her consent. They did so before she’d had the time to read it, and she and her family had had the chance to input:
The registrar said the second opinion referral has been sent to UCLH following a professionals meeting with Trust Directors etc. This was against previous agreements. The agreed things have not been done so the referral is incomplete and does not have all the information UCLH needs and not all the information is correct. Karen has not been given enough time to comment on the draft referral and to finish the letter that she wanted to send to UCLH with the referral.
Moreover, Karen and her family were wary of the second opinion referral from the start. In particular, as they noted in the petition update at the time that:
We feel that Dr Gabe has suggested the second opinion to try to get back up for his decision rather than to help Karen get home PN.
And as it turned out, they were also right to be – because now, UCLH has said they will not give her this.
Still no solution for severe ME – over a year since she was hospitalised
On 9 March, her family updated her petition again, and wrote that:
We have been told that UCLH have said they will not give Karen remote setting up of home PN (IV feeding). We are devastated and very worried.
In common with St Marks hospital Intestinal Rehabilitation Unit, UCLH are refusing to accept the harm that would be caused to Karen by her going to and being at St Marks. They are not willing to understand and believe the facts about severe ME. This information is readily available and it is unacceptable for people to ignore the effects of things on very severe ME.
It is unacceptable that these tertiary centres are refusing to adjust their usual practices for Karen with her very severe ME so that she can access home PN by being given remote setting up of home PN while she is in Conquest hospital without the ME being made worse by travelling to and being at a unit. Also, St Marks are reluctant to give Karen home PN even if she did go to the unit there. However, Karen needs PN to survive.
In other words, another NHS hospital is now unconscionably letting Karen down. Of course, she isn’t the first, or only severe ME patient that the NHS has treated in this way.
The Canary has reported on multiple women in the UK and elsewhere that healthcare systems have abysmally similarly abused and failed like this.
What’s more, her experience shows many alarming parallels with severe ME patient Maeve Boothby O’Neill who died after the NHS’s catalogue of catastrophic errors in her care.
And despite multiple media outlets spotlighting Karen’s case – including more recently, the Times and Sky News – little has changed.
In Karen’s own words…
From her hospital bed at St Mark’s, Karen has expressed the devastating impact of yet another refusal:
Video of Karen Gordon filmed on 8 Mar 2025 at Conquest Hospital Hastings UK. Please share with as many people as you can. Karen has very severe ME & has been in hospital for over a year. Please sign our petition to try to save Karen https://t.co/myZMK0Nolw
Karen Heather Michael pic.twitter.com/IV6b5Jo2Cp— Michael Gordon (@TeamKarenGordon) March 8, 2025
Karen voiced something which too many people living with ME the world over have experienced only too personally:
They’re showing a lack of understanding, which I feel is part of a widespread problem of people refusing to understand ME.
NHS consultants and officials have been “refusing the understand” – that is, persistently withholding the necessary care for Karen for well over a year. And not only that, but they’ve also now started withdrawing even some bare minimum adjustments they’d made to make the hospital environment more suitable for her severe ME:
ESHT are making issues about things that have previously been agreed and worked well, such as the timing of the cleaning each day and about the days that Karen is unable to have cleaning done because of her ME. We are all worried about why they making issues about these reasonable adjustments that Karen needs and that are in-line with ME advice. We are worried that they are trying to make us look bad and we are worried about why they would do this.
In her video, Karen summed up the state of all this and that what it really boils down to:
People should be able to access care that they need, in a way that’s suitable for their condition.
That shouldn’t be too much to ask. However, for severe ME patients right now under the care of the NHS, it’s abundantly evident that it still very much is.
Featured image via the Canary
