18 April 2017

We are very disappointed to tell you that the Scarborough and Ryedale CCG has now announced the decision to stop prescribing gluten free food to adults with coeliac disease as of 1 April 2017.  

In view of the higher cost of gluten free staple food, we understand the importance of having access to gluten free food on prescription, particularly for people on low incomes or those only able to shop in small convenience stores that do not stock staple gluten free foods. We are concerned that the measures taken by the CCG to save money will affect people’s ability to stick to the gluten free diet and that this in turn will result in ongoing symptoms and also increase the likelihood of complications of coeliac disease. As well as the individual suffering this may cause, it will also cost the NHS more in the long term.

Although the CCG has made this decision, we would like to stress that your GP is responsible for your medical care and ensuring that your individual clinical needs are met. If you are concerned that this policy change is having an impact on your ability to manage your gluten free diet and your coeliac disease, and is therefore having a detrimental effect on your health, you should see your GP who may be able to prescribe outside of the policy in individual cases of need. 

Have your say

To respond to your local CCGs decision to withdraw prescriptions:

• Contact the local Healthwatch by emailing, or calling on 01904 683 802 or writing to Healthwatch North Yorkshire, 15 Priory St, York, YO1 6ET
• Contact Scarborough and Ryedale CCG by emailing,  writing to NHS Scarborough and Ryedale CCG, Scarborough Town Hall - York House, St Nicholas Street, Scarborough, YO11 2HG, or calling on 01723 343660
• Write to your local MP, we have a sample letter on our website which you can use, or please feel free to write your own letter explaining how the changes will affect you
• Speak with your local GP about your individual case
• Watch out for more information on next campaign steps particularly on our website 

As part of our work, we are looking for people affected by prescribing cuts to act as case studies. This will enable us to give examples to the media of how this policy change has affected people with coeliac disease. To become a case study or to find out more about interview opportunities please call us on 0333 332 2033. 

We will continue to make strong representations to the CCGs on the issue and will also seek the support of clinicians in the area. We will be asking the CCGs how the impact of the change on the long term health of people with coeliac disease will be monitored.

Department of Health national consultation on gluten free prescribing

You may already have seen that the Department of Health has launched a national consultation on gluten free prescribing. The consultation outlines three options for the future of gluten free prescribing in England:

• Make no changes to current gluten free prescribing legislation
• Withdraw all gluten free prescriptions
• Only allow the prescribing of certain gluten free foods (eg limited to bread and flour)

The Department of Health is providing this opportunity for patients to have their say on the above options and again we would like to encourage you to make your voice heard. For further details and to participate in this national survey, please visit our website or, if you would like a paper copy of the consultation to respond to, please call us at 0333 332 2033.

We will keep you informed about our campaigns and research and let you know about developments in gluten free prescribing in Crossed Grain magazine, our electronic newsletters and on our website.