Public consultation on a proposal to stop providing gluten-free prescriptions

NHS Leicester, Leicestershire and Rutland is proposing to stop providing gluten-free products on prescription.

Before we make a final decision, we wish to understand what this would mean for people and their families

Click the play icon to show a video that explains more about this consultation.

What we are proposing

The local NHS is proposing a change to the availability of gluten-free products on prescription.

Currently, we provide our patients, including those diagnosed with coeliac disease and dermatitis herpetiformis, with up to eight units of bread or flour on prescription. This is taken up by approximately 1,300 people across Leicester, Leicestershire and Rutland.

For the reasons outlined below, we propose to stop providing gluten-free products on prescription for all adults and children. Before we make a final decision, we wish to understand what this means for people and their families.

Read on for further information about the proposals and to provide your feedback.

About coeliac disease and dermatitis herpetiformis

Gluten-free foods are sometimes prescribed to individuals who suffer from coeliac disease and/or dermatitis herpetiformis.

Coeliac disease is a long-term autoimmune condition, where the immune system mistakenly attacks healthy tissue. The immune system mistakes substances found inside gluten as a threat to the body and attacks them, which damages the surface of the small bowel, disrupting the body’s ability to absorb nutrients from food. Symptoms can range from mild to severe and can include bloating, diarrhoea, nausea, weight loss, headaches, osteoporosis, tiredness, hair loss and anaemia. These symptoms do not occur in all cases. It can also cause more general symptoms which impact on health, for example tiredness and unintentional weight loss.

Dermatitis herpetiformis is a skin condition associated with coeliac disease and gluten intolerance, which occurs as an itchy skin rash that commonly appears on the elbows, knees and buttocks. This affects around one in 3,300 people.

Coeliac disease and dermatitis herpetiformis are usually treated by excluding foods that contain gluten. All sources of gluten must be given up for life from a coeliac’s diet to prevent long-term damage to their health.

Why we are proposing this change

Accessibility of gluten-free foods

Historically, the availability of gluten-free foods was limited; therefore, the foods were made available from local pharmacies via prescriptions. However, with an increased awareness of coeliac disease and gluten intolerance, as well as a general trend towards eating less gluten, these foods have become more accessible in some supermarkets and online.

Food labelling

Better labelling on foods means that people are better able to see whether ordinary foods are free from gluten.

Affordability of gluten-free foods

We do appreciate that gluten-free food is still more expensive than equivalent products containing gluten. However, the price paid by the NHS for gluten-free foods on prescription is still much higher than the supermarket or online prices.

Eat well

It is possible to eat a gluten-free diet that follows the Eat Well Guide for balanced eating without the need for any specialist dietary foods. People can choose naturally gluten-free carbohydrate-containing food, such as rice and potatoes, as part of a healthy balanced diet.

Considering the options

When the NHS develops plans to change services, it appraises different options for change. This allows a few alternatives to be evaluated prior to putting together a proposal. It looks at how strong and weak each option is including accessibility and affordability.

How to have your say

Leicestershire and Rutland Integrated Care Board (ICB), the organisation that plans and pays for local services and medications, wanted to find out how it can support those who have a diagnoses of coeliac disease and/or dermatitis herpetiformis.

The consultation closed on Sunday 25 August 2024 at 11.59pm.

Key documents

What happens next

All the feedback we receive from the public consultation will be analysed and evaluated. A final report of the public consultation findings will be received by the Integrated Care Board in a public meeting and the feedback will be considered in any decisions they make.

We will promote the Board Meeting to enable people to attend and hear the discussions. All decisions will be made public after the Board Meeting. This work will include communicating the decision via local newspapers, social and broadcast media.