18 December 2023

NHS West Yorkshire Integrated Care Board (ICB) has announced its decision to withdraw gluten free prescriptions for people with a diagnosis of coeliac disease across Leeds and Calderdale. The decision expands a policy currently in place across the ICB’s other places (Bradford district and Craven, Kirklees and Wakefield district) and effectively prevents people with coeliac disease across the ICB from accessing gluten free bread and flour mix on prescription. The new policy comes into force with immediate effect for newly diagnosed patients and for existing recipients of prescriptions in Leeds and Calderdale from April 2024. 

The charity met with representatives from the ICB and submitted evidence in support of continued provision, and we are extremely concerned about the potential impact of this decision. In our discussions and evidence, we highlighted the significant additional cost of gluten free staple products, which poses a real challenge to maintaining the gluten free diet, the only treatment for the condition. Almost 90% of respondents to the ICB’s own survey said that the decision to stop prescribing gluten free products would have an impact on them or their household.  Despite this, the ICB has made no effort to meaningfully reduce the impact of this policy change.  

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

The cost of providing gluten free prescriptions is far less than the cost of treating these conditions. There is no cure, and the only treatment is a strict gluten free diet for life, which, during the cost of living crisis, poses an additional challenge for people with coeliac disease.  

A 2023 Coeliac UK report revealed a weekly gluten free food shop can be as much as 20% more expensive than a standard weekly food shop. A gluten free loaf of bread is on average 4.3 times more expensive than a standard gluten containing loaf (gram for gram). There is even more disparity between budget products. The cheapest gluten free loaf of bread costs 7.2 times more than the cheapest gluten containing loaf*(gram for gram). 

In a recent Coeliac UK survey on shopping gluten free with over 1,000 completions, 77% of respondents struggled to afford gluten free products and 72% said shopping gluten free adversely affects their quality of life _[1].    

Contrary to the ICB’s statements, complete replacement of gluten containing staple foods is not easy and gluten free substitute foods are important for both practical reasons and for their nutritional contribution to the diet. For example, replacing two slices of gluten free bread with a portion of rice containing the same number of calories would reduce the iron content by 96% and the calcium content by 90%. Similarly, replacing gluten free bread with a portion of peeled, boiled potatoes containing the same number of calories would reduce the iron content by 71% and the calcium content by 93% _[2,3]. Replacing gluten free staples such as bread with rice and potatoes also presents practical challenges for food on the go, packed lunches and there are additional preparation requirements and energy costs for cooking.   

Those most affected by the withdrawal of prescriptions will likely be the least able to manage the multiple adaptions required to maintain their nutritional balance while also ensuring their diet remains gluten free.  

We requested an urgent meeting with representatives of the ICB where we made clear our opposition to this decision and that the lack of strategies in place to reduce the impact of this policy is entirely unacceptable. We will be further writing to ICB leadership and national policy makers to make clear our views and calling on them to take immediate action to review this ill thought through and damaging decision.  

Tristan Humphreys, Head of Advocacy, Coeliac UK said:  

“We are extremely disappointed that NHS West Yorkshire ICB has taken this decision. These changes remove a much-needed lifeline for those with coeliac disease in Leeds and Calderdale at a time when the cost of living crisis is hitting people with coeliac disease particularly hard.   

Failure to support people with coeliac disease risks them developing serious long term conditions down the line, the cost of which overshadows that of gluten free prescriptions. There is a complete lack of mitigation from the ICB for those affected by this decision, and we have grave concerns this decision will have a detrimental impact on the coeliac community across West Yorkshire. The ICB claims there has not been any adverse impact on the places that previously withdrew gluten free prescribing, but they have failed to provide us with any evidence of monitoring.  

We urge the ICB to look again at this decision and do the right thing, based on the evidence. Only months ago, neighbouring NHS South Yorkshire ICB recognised the important role gluten free prescriptions play in supporting those with coeliac disease and adopted a policy of gluten free prescribing for health equality grounds. It is our view that West Yorkshire should reverse this unacceptable decision and follow suit.”  

_{[1] Coeliac UK, Cost and Availability Supermarket Surveys (data collected 1 June 2023 to 8 September 2023) 
[2] McCance and Widdowson (2021) Composition of foods integrated dataset (CoFID); https://www.gov.uk/government/publications/composition-of-foods-integrated-dataset-cofid  
[3] Coeliac UK, Coeliac Diet and Nutrition Survey conducted 2018-2019 (unpublished)}