AAA support for coeliacs

Action Against Allergy is giving its support to the campaign being co-ordinated by Coeliac UK to persuade the NHS to seek an alternative to their proposed withdrawal of prescriptions for the gluten free foods needed by people with coeliac disease.

AAA trustee Michelle Berriedale-Johnson writes:
“We believe that removing access to prescription gluten free food may seriously put at risk the future health of the most vulnerable of the coeliac population.

“In the context of the NHS’ current financial crisis, this may also be a false economy. In the longer term, treating vulnerable coeliacs who have been unable to access gluten free foods may cost a great deal more than providing them with prescription foods now.”

Coeliac UK has said:
“We have now received the official consultation regarding the future of gluten free prescribing and we will be talking to all of our stakeholders before we respond comprehensively to the consultation. Coeliac UK is looking forward to the opportunity to engage with the NHS in the consultation process, having already written to the chief executive of NHS England, Simon Stevens, to request a meeting to make sure that the needs of patients with coeliac disease are realised and that an equitable solution is found.

“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 announcement sets out three options as part of the consultation:

  • option 1- make no changes: 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 22 June which gives us time to make our case again. We ask everyone to write to their MP (see below) and ask them to support the Early Day Motion (see below) put forward by MP Kevan Jones, in support of gluten free prescribing.”

What is Coeliac UK doing?

“We have requested a meeting with Simon Stevens, Chief Executive of NHS England, to discuss the proposals announced in the media this week. We are also contacting MPs and external stakeholders to garner support for our campaign to retain this essential NHS support. And of course, we are in touch with commissioners, making the case for gluten free prescribing and ensuring they understand the needs of people with coeliac disease.

“Where local consultations are being launched, we have been contacting local members by post, email and through social media to ensure you have the chance to have your voice heard by completing consultation surveys. Only by as many of us as possible making the case for gluten free prescribing can we win the fight for this vital service.

“We have produced a briefing note for MPs on this subject, and the case for prescribing was the subject of a Westminster Hall debate last November, tabled by Kevan Jones MP

“The media are particularly important too so that we can increase awareness of the issue. We have focused our attention on media in areas where prescriptions have been cut or there are consultations going on.”

Suggested letter to your MP for those who are coeliac. If not, the letter can be adapted accordingly.

House of Commons
London, SW1A 0AA

Dear [Enter name again, as per the name in the addressee block]

Withdrawal of gluten-free foods on prescription for patients with coeliac disease

I am writing to you because I am extremely concerned about a recent decision taken by the NHS Clinical Commissioning Group (CCG); to end my access to gluten-free staple foods on prescription.  As strict adherence to a gluten-free diet is the only treatment for coeliac disease, this change in policy means that I no longer have access to NHS treatment or support for my life long health condition.

I am very troubled by the fact that this decision seems to have been taken exclusively for financial reasons, particularly as the Government has promised to protect NHS health budgets in real terms. Coeliac disease is a long term health condition, which if left untreated, can lead to serious health complications, such as osteoporosis, fertility problems and in rare cases, small bowel cancer.  So, while small savings may be made now by cutting services for patients, there are likely to be long term financial implications resulting from this decision by the CCG.  It is effectively a false economy.

The decision does not modernise the service, improve health outcomes for patients or reduce health inequalities.  Indeed, the opposite is likely to be true, as no monitoring of patient outcomes or processes to assess the impact of this policy change have been put in place.  Such monitoring could include ongoing dietetic advice and support to ensure adherence to the gluten-free diet, or an annual GP review for the assessment of outcomes and comorbidities.

I am also disappointed in the lack of patient involvement in this decision.  As a patient with the condition, I would have expected an opportunity to engage in a formal consultation process with the CCG.  I would also expect some prior notification of any change in this area, as the CCG’s decision creates a significant financial impact for people with coeliac disease, particularly those on fixed and low incomes.  Instead, I was simply notified in writing about the new policy and that it would be effective almost immediately.

I would like to hear your views about the process and the basis of the decision by the CCG and am seeking your support in challenging this change in policy.

Yours sincerely

[Insert your name here]


Early Day Motion 1123


That this House recognises that people with coeliac disease, for whom the only treatment is a strict gluten-free diet for life, must have access to gluten-free prescriptions to maintain their health; notes that without access to prescriptions the most vulnerable people, those on low incomes, the elderly and those with mobility problems, will suffer most as confirmed by independent research; considers that the potential health risk to patients, including osteoporosis, infertility and cancer of the small bowel, may cost the NHS more in the long run; calls for the maintenance of gluten-free prescriptions on the NHS; and further calls for the consideration of a national gluten-free prescribing scheme for England and renewed efforts to improve recognition of coeliac disease by primary care health services.