Coeliac disease is a serious autoimmune condition affecting 1 in 100 people in the UK, for which a medically prescribed, strict gluten free diet is the only treatment. If left untreated, it can cause gut damage and serious health complications.
Access to gluten free staple substitute foods through NHS prescriptions has been a lifeline to those with the condition. However, recent policy changes by multiple Integrated Care Boards (ICBs) in England have led to the withdrawal of gluten free prescriptions in various regions, making access to gluten free bread and flour increasingly difficult, particularly concerning for those with lower income.
A recent Cost of Living Report from Coeliac UK highlights that a weekly gluten free food shop can be up to 35% more expensive than a regular shop. As a result of numerous ICBs in England withdrawing support on prescription, many individuals with coeliac disease now face the challenging reality of being unable to afford the staple gluten free substitute foods they need to stay well.
To call on the Government to act, Coeliac UK organised a day of action in Westminster which brought together patient representatives, healthcare professionals, and MPs from across the political spectrum to highlight the urgent need for government intervention. A demonstration was held in Parliament Square, where those affected shared personal stories of how prescription cuts have impacted their health and finances.
Baroness Bakewell of Hardington Mandeville, Tom Rutland MP, Sharon Hodgson MP, and Amanda Hack MP were among the politicians who joined on the day to express their support, reinforcing the message that gluten free prescriptions are a medical necessity, not a luxury.
Tristan Humphreys, Head of Advocacy and Public Affairs at Coeliac UK, said: "The turnout today demonstrates the strength of feeling on this issue. Patients, healthcare professionals, and MPs have all come together to demand that the Government takes action to prevent further health inequalities. We cannot allow short-sighted policy decisions to put people with coeliac disease at risk."
Among those directly impacted is Kate Powell from Waterlooville, Hampshire, who has two daughters with coeliac disease. Since Hampshire & Isle of Wight ICB withdrew gluten free prescriptions in 2024, her family has faced increasing costs to maintain their medically necessary diet. She said: “Prescriptions were a vital lifeline before they were removed, and we’re now spending on average an extra £10 to £15 on our weekly shop because of it. Anything in the ‘free from’ aisle is really expensive. We’ve tried to cut down on bread but it’s really hard and has a big impact on us as a family. Availability is also an issue, and we’ll typically need to visit two or three shops to get everything we need for the girls.”
Dr Hugo Penny, Consultant Gastroenterologist at Sheffield Teaching Hospitals NHS Foundation Trust and Clinical Lecturer at the University of Sheffield said: “A strict gluten free diet is the only effective treatment for those with coeliac disease. Access to gluten free bread and flour therefore plays a crucial role in keeping my patients well. Unfortunately, I have seen patients without access to support on prescription struggling to afford the staple gluten free substitute foods they need.
“Ultimately it will be the least able to afford the additional costs of this medically prescribed diet that are hit hardest. It is for this reason that our local ICB (South Yorkshire) chose to re-instate prescriptions in Sheffield on health equality grounds. I would urge the Government to look to this example and ensure other commissioners follow suit."
Coeliac UK is calling on the Government to issue updated guidance to ICBs, ensuring that all individuals with coeliac disease who need it, have access to gluten free prescriptions regardless of where they live. The charity also urges policymakers to collaborate with healthcare professionals and patients to establish best practices and address the growing disparities in access to essential gluten free staple foods.
Tristan Humphreys added: “This petition hand in marks an important step in addressing the postcode lottery facing people with coeliac disease. The reality for too many people across the UK with coeliac disease is that the food that keeps them well is too expensive and hard to access. Withdrawal of the lifeline of gluten free bread and flour on prescriptions risks cutting them adrift. This is bad news for the NHS that has to treat resultant health complications and devastating for the individuals impacted. We hope that the UK Government will take notice of our concerns, and those of patients, healthcare professionals, and supportive MPs who recognise the essential role of gluten free staple substitute foods in managing coeliac disease. We welcome the Government's commitment to prevention of ill health and are optimistic that together we can address the postcode lottery of healthy inequity for patients with coeliac disease.”
To find out more about Coeliac UK, visit: https://www.coeliac.org.uk/get-involved/campaign-with-us/cost-access-and-availability-of-gluten-free-food/
To download the latest Cost of Living report from Coeliac UK, click here: https://www.coeliac.org.uk/document-library/9192-2024-cost-of-living-report/