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  4. Campaign with us on prescriptions

Campaign with us on prescriptions

  • Following a strict gluten-free diet for life is the only treatment for people with coeliac disease
  • NHS England is currently consulting on the future of gluten free prescribing
  • Some Clinical Commissioning Groups are consulting on, restricting, or even removing gluten-free prescription services
  • Coeliac UK is campaigning for this vital service and to make sure that the voices of people with coeliac disease are heard and considered in local decision making
  • But we can’t do it without you - please help us.

NHS England consultation

The future of gluten free prescribing is currently being consulted on by NHS England and closes on 22 June.

We have now completed our comprehensive response to the consultation. We will be trying to persuade the NHS to consider alternatives that will deliver cost savings, while providing support for patients with coeliac disease and particularly the most vulnerable, to support dietary adherence and reduce the risk of long term complications which could cost the NHS more in the long run.

The official consultation sets out three options for the future of gluten free prescribing in England:

  • option 1- make no changes to the National Health Service 
  • option 2- end prescribing of gluten free foods in primary care
  • option 3- restrict prescribing of gluten free foods: to only allow the prescribing of certain gluten free foods (eg bread and flour) in primary care.

The deadline to respond is midday 22 June. You can also respond to the consultation.

We will keep members and supporters updated on our website and in our email newsletter.

Local voices and local decisions

NHS policy making is also happening at a local level and we are seeing consultations launched even though there is an England wide consultation, so it is important to make your voice heard. You have a lot of impact as a patient affected by NHS policy - use this to your advantage and help support our campaign as we make the case for gluten free prescribing. 

Already feedback from Members and healthcare professionals has helped in our communications with Clinical Commissioning Groups (CCGs) and helped us win some victories. A number of Trusts have revised their policies to reinstate products previously removed which bring them more in line with national guidelines. Your support will help us continue this.

Complain to the CCG, HealthWatch or Health and Wellbeing Board

If your prescription service is being restricted or withdrawn, contact your CCG in the first instance. If you’re not satisfied with the response, you can write to HealthWatch which is the national consumer champion for health and care. The organisation has statutory powers to ensure the voice of the patient is strengthened and heard by those who commission, deliver and regulate health and care services. Use this link to find your nearest Local Healthwatch. You might want to refer to our parliamentary briefing note for evidence or supporting statements to include in your letter.

You can also write to the local Health and Wellbeing Board which aim to give communities a greater say in understanding and addressing their local health needs and have a strategic influence over commissioning decisions across health. A directory of all Health and Wellbeing Boards can be found on the Kings Fund website. We have drafted a sample letter you can use.

Tell your story

We are telling the media about this issue so that people understand why gluten-free prescribing is important. You can help us by telling us how prescriptions affect you by being a case study and making the story human. Complete our case study form and tell us how prescriptions affect you.

How do I find out more?

Please look out for updates and developments in your online newsletter and Crossed Grain magazine, or you can contact us through our contact form.

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