“I felt like my condition was finally being taken seriously” - How research is improving lives for those with coeliac disease

A woman from Swansea living with coeliac disease has praised a Health and Care Research Wales Evidence Centre study exploring the impact of a pre-paid card scheme that helps cover the extra cost of buying gluten-free foods.

Over 20 years ago, Lisa Wilson was diagnosed with coeliac disease, a condition where your immune system attacks your own tissues when you eat gluten. She didn’t know anything about the disease or anyone else who had it which left her feeling ‘isolated’.

At the time, Lisa was offered gluten free food through her GP on prescription which she needed to collect from a pharmacy – a process which could take several days due to the need to order it in advance, and dependent on whether items were in stock.

"[It] changed everything overnight."

Lisa said: “When my husband and I moved to west Wales ten years ago, I was offered a pre-paid card by the local health board to spend on gluten free food, which changed everything overnight. I can use it anywhere that accepts Mastercard transactions and even online as well.

“Having a card that I could use specifically to buy what I needed had a big impact on me – I felt like my condition was finally being taken seriously.”

Through interviews with people like Lisa who access the scheme, which is currently only available in Hywel Dda University Health Board, the Health and Care Research Wales Evidence Centre found it offers significant benefits to patients, such as reduced financial burden, increased choice and convenience.

The study findings will be used to inform the development of the scheme as an option for coeliac patients across Wales, with the aim reducing the financial burden on both patients and the healthcare system.

Dr Natalie Joseph-Williams, Associate Director of the Health and Care Research Wales Evidence Centre, which was set up in 2023 to provide decision-makers with vital research evidence, said: “coeliac disease requires a strict gluten-free diet to prevent long-term complications, and the current prescription system has limitations.

“It’s essential that, through research, we understand if interventions like the subsidy card-scheme really have a positive impact on patient’s lives, to make sure we can offer the best treatments and care possible to people across Wales and beyond.”

The team also identified ways the scheme could be optimised for those who want to access it, including better ways to manage card balances and improved partnerships with retailers.

Lisa continued: “In recent years there has been a trend towards people adopting a ‘gluten free diet’, but for people with coeliac disease there is no such thing – it’s a serious condition that can make you very ill and damage your body.  It affects so many aspects of your quality of life.

“I think it’s fantastic that research has shown the positive impact the card has on people with coeliac disease so it can be rolled out across Wales and more people can benefit.”

You can read more about the study on the Health and Care Research Wales Evidence Centre website and sign-up to our newsletter to have the latest news delivered straight to your inbox.