8 February 2024

We’re very disappointed that NHS Hampshire and Isle of Wight Integrated Care Board (ICB) has announced its decision to withdraw gluten free prescriptions for people with a diagnosis of coeliac disease across the region.

The decision expands a policy currently in place in the Isle of Wight to the rest of the area. This policy effectively prevents people with coeliac disease across the ICB from accessing gluten free bread and flour mix on prescription. The new policy came into force with immediate effect in January. No prior warning was provided to patients or to Coeliac UK and no evidence has yet been provided publicly to support the decision. We are shocked and concerned by both the decision and the failure to appropriately consult those affected, and are calling for an urgent review.  

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 engagement with the patient community was unacceptable. To date we have still yet to hear directly from senior leadership at the ICB and have been forced to submit a Freedom of Information request asking for the supporting documents behind this decision. 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 Hampshire & Isle of Wight ICB has taken this decision and are shocked at their failure to consult with patients or Coeliac UK. These changes remove a much needed lifeline for those with coeliac disease in the region at a time when the cost of living crisis is hitting people with coeliac disease particularly hard. To do so without appropriately assessing the evidence or speaking to patients about its impact is unacceptable.      

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 the region.    

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

How you can help  

We would urge any members of the community living in the region to contact the ICB and your local MP to raise your concerns. Your support will help us make the case for prescribing. You can do so by using our template letter or by contacting the ICB directly as below. 

Contact the ICB 

To make a complaint, email the ICB at hiowicb-hsi.patientexperience@nhs.net or call 0300 561 2561  

View the template letter here

Contact your MP 

You can also use our template letter to write to your MP.  

Find your MPs contact details here

Tell your story to help make a change 

We’re looking for people to share their stories of how this change might impact them. If you’re happy to share your story, please get in touch.

_{[1] Coeliac UK, Cost and Availability Supermarket Surveys (data collected 1 June 2023 to 8 September 2023)}   

_{[2,3] McCance and Widdowson (2021) Composition of foods integrated dataset (CoFID); https://www.gov.uk/government/publications/composition-of-foods-integrated-dataset-cofid} 

_{* Coeliac UK, Coeliac Diet and Nutrition Survey conducted 2018-2019 (unpublished)}