Coeliac UK slams Hampshire ICB for stopping gluten free prescriptions

People with coeliac diseases across Hampshire and the Isle of Wight are no longer able to get products like gluten-free bread and flour mix on prescription.

Coeliac UK says Hampshire and Isle of Wight Integrated Care Board (ICB)’s new policy came into force last month without any warning or evidence to publicly support the decision.

Last year, the charity revealed that a weekly gluten-free food shop can be 20 per cent more expensive. In a survey on shopping gluten-free with more than 1,000 respondents, 77 per cent said they struggled to afford gluten-free products.

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Katherine Clarke (Image: Coeliac UK)

Katherine Clarke, from Portchester, suffered from weight loss and neurological symptoms before she was diagnosed with coeliac disease when she was 16.

She said: “I have been receiving gluten-free bread prescriptions since my diagnosis in 2016. I’m a stay-at-home mum of two boys and having this support has been a lifeline for me. With bread costs rising and stock in the supermarket often very low, having my prescription has been a huge help.

“The cost of a gluten-free loaf compared to gluten-containing bread in recent years is ridiculous and the cost of my food shopping is only getting higher and higher. My family and I can’t afford for it to go up anymore. I feel hugely let down by this decision and worried about the future.”

Tristan Humphreys, from Coeliac UK, said: “We are extremely disappointed that Hampshire and Isle of Wight ICB has taken this decision and are shocked at their failure to consult patients or Coeliac UK.

“These changes remove a lifeline for those with coeliac disease at a time when the cost of living crisis is hitting them particularly hard. To do so without appropriately assessing the evidence or speaking to patients about its impact is unacceptable. 

“We urge the ICB to look again at this decision and do the right thing, based on the evidence.”  

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Dr Tim Cooper, deputy chief medical officer for NHS Hampshire and Isle of Wight, said: “We have a duty to use the limited amount of funding available in a way that means local people have access to the best possible medical care, treatment and support for their health needs. This means we are constantly needing to make difficult decisions to get best value for money.

“The decision to request gluten-free foods are no longer routinely prescribed was not taken lightly and took into consideration a range of both clinical and social factors, including the wider availability of gluten-free products in supermarkets.

“We recognise this change in guidance may have a negative impact on some people. GP practices will continue to support and advise patients on how best to monitor and manage their condition.

“If you think you, or someone you care for, has an exceptional medical reason to receive gluten-free foods on prescription, please discuss this with your GP practice and you may be able to apply for an individual funding request to help. We welcome all feedback on this change and encourage people to share their thoughts.”

Coeliac disease is a serious autoimmune condition, affecting around one in 100 people. Symptoms can include bloating, stomach cramps, vomiting, diarrhoea and tiredness. Extra intestinal issues can be very diverse and include anaemia, low bone density, skin rashes, recurrent mouth ulcers, neurological (nerve) problems such as ataxia (loss of coordination, poor balance) and peripheral neuropathy (numbness and tingling in the hands and feet).

When a person with coeliac disease eats gluten, it can cause debilitating symptoms and lead to associated conditions such as osteoporosis, neurological dysfunction, unexplained infertility, recurrent miscarriage and in rare cases even small bowel cancer.