Care for people with the chronic fatigue syndrome ME needs to be better in Huddersfield, according to a support group.

The Kirklees and Calderdale Independent ME Support Group has spoken out after the tragic death of a 27-year-old ME patient who died from starvation in a well-publicised national case.

In the last few months of her life Maeve Boothby-O’Neill from Devon was confined to bed, unable to chew food and had difficulty drinking because she was not able to sit up.

A doctor who treated her told an inquest into her death there needed to be more funding and research into ME to provide the evidence and guidelines for clinicians to work from and also somewhere within the NHS to provide specialist care for patients with severe ME and an easy way to access it.

Maeve’s mother, Sarah Boothby, told the inquest her daughter’s death was “premature and wholly preventable’’ as malnutrition in cases of severe ME was “common.’’

After the inquest, which ruled that Maeve died from natural causes, the Kirklees and Calderdale Independent ME Support Group surveyed its members with the help of Healthwatch Kirklees and found:

·       Over half of respondents did not have access to a hospital consultant.

·       Nearly a quarter of respondents were treated as though their ME was a mental health condition.

·       Two thirds of respondents could not access treatment in Kirklees or Calderdale.

·       Local people feel that GPs are unsupportive and lack understanding of ME.

The group has been liaising with the West Yorkshire Integrated Care Board which plans health services in the region and the Board now intends to employ a lead on ME for one year, starting later this year. The ME Support Group also wants GPs to meet ME members to try to improve their understanding of the condition.

Kirklees and Calderdale Independent ME Support Group campaigns officer Wayne Senior said: “We urge GPs and decision makers in the Integrated Care Board to work closely with us so that together we can improve local services for people who have ME.

“Otherwise, somebody in Kirklees or Calderdale could starve to death like Maeve Boothby-O’Neill – not because they don’t want to eat, but because they are too incapacitated by their ME to eat and they cannot access appropriate treatment.”

Karen Hargrave, co-founder of #ThereForME, a national campaign for people with very severe ME or Long Covid, said: “Although there are some extremely good healthcare professionals fighting our corner they are struggling to be heard among all the disbelief and scepticism about the seriousness of the disease.

“Post-viral illness has always been around and we’re going to continue to see more of it following Covid-19. Similar to other chronic conditions, the higher oestrogen levels in the female body mean that younger women are disproportionately affected by conditions like ME and Long Covid. This often isn’t taken seriously by doctors or by society at large.

“A consultant described it as ‘unfortunate’ that healthcare staff were unfamiliar with Maeve’s condition. It’s not unfortunate, it’s downright unacceptable.”

For more on Kirklees and Calderdale Independent ME Support Group go to https://kcimesg.co.uk/

Written by ANDY HIRST who runs his own Yorkshire freelance journalism agency AH! PR (https://ah-pr.com/) specialising in press releases, blogging, website content and copywriting. 

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