The Times 21st Oct 2024: Severely ill patient with ME begs for home feeding

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https://archive.ph/lYryd#selection-1427.0-1813.10​

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Severely ill patient with ME begs for home feeding​

Karen Gordon, who has suffered with myalgic encephalomyelitis since she was ten, fears she will otherwise die of malnutrition

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Fiona Hamilton
, Chief Reporter
Monday October 21 2024, 6.50pm BST, The Times

Karen Gordon with her mother, Heather, at home last year
FAMILY HANDOUT
A severely ill patient with myalgic encephalomyelitis is begging a hospital to facilitate intravenous feeding at home, fearing she will otherwise die of malnutrition.
Karen Gordon, 38, has been suffering with the condition, also known as chronic fatigue syndrome, since she was ten after falling ill with a virus.
Her condition has steadily deteriorated in recent years and she has spent the past ten months on a ward in the Conquest Hospital in Hastings suffering hypersensitivity to light, unable to feed herself and struggling to communicate. Doctors want her to travel to a specialist unit in London for help but she and her parents warn the journey is too arduous and will put her ME into a perilous state.

Gordon in hospital earlier this year as her condition deteriorated
FAMILY HANDOUT

Heather and Michael Gordon, who fear their daughter would not cope with being moved to another hospital
CIARAN MCCRICKARD FOR THE TIMES
Her family fear that the lack of expertise on ME means that Gordon is deteriorating further and not being offered solutions to address her symptoms.
The case bears parallels to that of Maeve Boothby O’Neill, who suffered with ME from her early teens and died aged 27 in October 2021. Boothby O’Neill begged for help to eat when she became so fatigued that her body shut down but doctors were unable to treat her illness, despite three admissions to the Royal Devon and Exeter Hospital in 2021.
Earlier this month Deborah Archer, a coroner, issued a landmark report to try to prevent further deaths. She said that Wes Streeting, the health secretary, and NHS officials needed to urgently address the “non-existent” care available to ME sufferers and the lack of funding for research into the condition.
Despite the government’s admission that Boothby O’Neill fell through the cracks of the system, there are still no specialist beds across the country for severe ME patients, which meant there was no treatment. Gordon’s case is a reflection of that problem.
She has been ill since the late 1990s and her condition has deteriorated to the point of needing artificial feeding. This has involved a series of hospital admissions in recent years. She was admitted nine months ago and is being fed with nutrients directly into her bloodstream. Her mother, Heather, said that stopping the feeding would be a “death sentence”.

Maeve Boothby O’Neill, who died in 2021aged 27
PA
The local hospital trust has told the family its doctors have done all they can but lack the relevant expertise. Medics want Gordon to travel to a specialist bowel hospital in London for an assessment before she can be ultimately transferred for feeding at home.
Heather Gordon said her daughter cannot take the 100 mile trip and needed to be transferred from the local hospital to their home. “A trip like that would exacerbate her symptoms terribly. She is hyper sensitive, battles severe fatigue, pain and nausea. She just cannot do it,” she said.
Gordon has been given her own room at the Conquest, which is as quiet and dark as possible, but this would not be available in London.
Her family warn that being in a hospital bay on a busy ward would be “overwhelming and exhausting” for Gordon. They believe it would cause her symptoms to deteriorate further and risk her life. They say that some other NHS hospitals do not require such an erroneous process to facilitate home feeding.
The coroner in Boothby O’Neills case raised shortcomings in Nice guidelines on ME — in particular about how nutrition support should be handled for severe patients.

Gordon aged 12. She started suffering with ME following a virus when she was ten years old
FAMIYL HANDOUT
Doctors at the Royal Devon have overhauled their response to ME and are feeding three patients at home, but their calls for national action have fallen on deaf ears. ME campaigners warn that patients in other trust areas are not getting the same support because of lack of specialist knowledge, resources and national intervention.
Gordon said: “No patient should have to die because due to their illness they cannot follow the usual practice of their NHS trust. The trust should find a way for a patient to be given what they need in a way that is suitable for them.”
• Patients with severe ME at risk of starvation, doctors say
Her mother added: “Karen needs the hospital to acknowledge the circumstances of her severe ME and make special arrangements that facilitate her having intravenous feeding and IV at home, without this trip to London that risks her life.”
A spokesman for East Sussex Healthcare NHS Trust said: “When patients, as in Karen’s case, become more unwell or have a rare condition, it is not uncommon for them to need specialist expertise to treat their condition which is beyond what is available in their local hospital.
“We have been working with a specialist NHS centre that has this expertise, as a national leader in their field, to arrange a course of treatment that we believe can improve Karen’s condition.
“For as long as Karen is under our care, our hospital and community staff are personally and professionally committed to doing the best they can for her, to accommodate her wider care needs in relation to her ME and the impact that has on her day-to-day wellbeing.”

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Healthcare

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