Coeliac UK calls for change following death of coeliac patient in hospital

24 November 2023

A North Wales coroner has concluded there was a ‘gross failure’ in the case of a coeliac patient, who tragically died in Wrexham Maelor hospital. Mrs Hazel Pearson, 79, had coeliac disease and a number of other medical conditions and died from aspiration pneumonia four days after being given Weetabix for breakfast while at the hospital. Whilst her coeliac disease was noted on her admission records, there was no sign above her bed and staff were unaware of her dietary needs and as a result Mrs Pearson had been fed gluten containing food on multiple occasions.    

Coeliac UK is deeply saddened and concerned by this tragic case and our thoughts are with Mrs Pearson’s loved ones at this difficult time. Her death constitutes a clear failure of care that should never have been allowed to happen. Whilst this is a particularly shocking example, it reflects a system that far too often fails those with coeliac disease when they need it most. 

Coeliac disease is a serious autoimmune condition for which the only treatment is a medically prescribed gluten free diet. Symptoms vary from bloating, diarrhoea, vomiting and stomach pain, to mouth ulcers, tiredness and anaemia, amongst others. Ongoing ingestion of gluten may also lead to complications such as osteoporosis, neurological conditions such as ataxia and peripheral neuropathy and in rare cases, small bowel cancer.     

In all four nations of the UK, someone with coeliac disease, attending hospital should have access to the essential gluten free food they need. It is especially important when a person is in hospital as they will be vulnerable and may not be in a position to advocate for themselves.  

Despite this, too many people with coeliac disease have a poor experience in hospital when it comes to accessing the essential gluten free food they require. A Coeliac UK survey, showed: 

  • almost 80% of respondents were either dissatisfied or very dissatisfied with their experience of gluten free food in hospital
  •  over 70% rated both the catering staff and medical staff’s knowledge of the gluten free diet and risk of cross contamination as either poor or very poor  
  • 73% of respondents had gluten free food brought into the hospital by family and friends  

At Coeliac UK we continually advocate for better access to gluten free food in and out of the home, including hospitals where people are frequently unable to advocate for themselves. We have provided useful information for patients, their family, friends and carers which is available on our website here.

However, it is high time that patients with coeliac disease were able to rely on the appropriate care and support they deserve when in hospital. The inquest identified a failure of training and communication at ward level that falls well short of what should be expected under existing mandatory hospital food standards. We are calling on Government in Wales and across the UK to ensure these are met, increase funding to provide education and training on this serious autoimmune condition and its treatment, the gluten free diet. Ultimately to ensure such failings can never happen again.  

The case of Mrs Pearson is tragic and deeply concerning. It is imperative that the health service across the UK learns the lessons and begins delivering proper care for the coeliac patients it serves.  

Tristan Humphreys, Head of Advocacy for Coeliac UK said: 

“We are deeply saddened and concerned by this verdict and our thoughts go out to Mrs Pearson’s loved ones at this very difficult time. Her death reflects a clear failure of care and it is patently unacceptable that this was allowed to happen. Coeliac disease is a serious autoimmune condition for which the only treatment is a medically prescribed gluten free diet. It is critical that people with coeliac disease can access the gluten free food they need to be healthy. This is all the more important when someone is unwell and, as in Mrs Pearson’s tragic case, unable to advocate for themselves. Wales has mandatory food standards which make very clear the level of care that should be provided yet these have not been met. As a charity, we are empowering patients, family members, carers and working with hospital caterers by providing advice and guidance to support safe provision of gluten free food. However, it’s high time the health service consistently delivered the care people with coeliac disease deserve.” 
 

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