Dear Editor
With great sadness and frustration, I read recently about an inquest into the death of an 80-year-old with coeliac disease who was fed cereal containing gluten in hospital. The patient fell ill within hours and started to vomit. She died four days later from aspiration pneumonia.
As someone with coeliac disease myself, it is upsetting to realise that even among medical professionals there is such a lack of understanding of this serious autoimmune disease.
One in 100 people have coeliac disease, and there is no cure. The only treatment is a strict gluten free diet. Even a crumb of gluten can cause a severe reaction.
My own mother, who is 86, has had difficult experiences in hospital. She was offered toast containing gluten, which would have made her very unwell. Another time she was told she was ‘too late’ at 4pm for gluten free food. The hospital clearly regarded a gluten free diet as a specialist request, rather than a medical necessity that should be offered as part of standard care provisions.
At Coeliac UK, we are calling on all hospitals to urgently review their guidelines and protocols. We’re asking the NHS to update the information about coeliac disease on their website as the current list of symptoms is misleading. And we want to see better training for healthcare professionals to improve their understanding of coeliac disease, and their management of patients who have the condition.
No one with coeliac disease should have to worry about being glutened in hospital.
Yours sincerely
Maureen Burnside
Chair, Coeliac UK