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Campaign to protect prescription services in England

Simon Stevens, Chief Executive of NHS England announced in the media the proposal to remove access to gluten free staple foods on prescription, amongst other items. We have stepped up our campaign and highlighted the need for prescribing in the media to give profile to the needs of people with coeliac disease. We are also working on our response to the consultation, which is open for comment and feedback until 22 June.

This England wide consultation is a dramatic turn for our prescriptions campaign as we have been fighting the changing landscape of prescribing in the NHS in England for a couple of years now. Over recent years a number of local commissioning groups in England have amended policies on gluten free prescribing. This has resulted in a postcode lottery, as some patients have had access to gluten free food on prescription stopped, others have had restrictions put in place, while others areas have decided that no change was required. Around 20% of local commissioning groups in England have taken a decision to stop access to gluten free food via prescription. 

Are prescription foods really necessary?

Yes. Whilst gluten-free staple foods are more widely available today than ever before, they are still not readily accessible across the country.

In many budget or convenience stores, research shows that gluten-free staples are virtually absent. What’s more, those that are available are prohibitively expensive for too many people, costing three to four times more than regular gluten-containing foods. The result is that those on a limited income, the elderly or those living in remote rural areas can be left struggling to maintain a gluten-free diet which has a huge impact on their health.

We feel strongly that the prescribing of gluten-free foods is an essential NHS service that should be available to all people with clinically diagnosed coeliac disease. Not only do they support the most vulnerable patients in adhering to what is often a very restrictive and expensive diet, gluten-free diet for life, research has demonstrated that adherence to the gluten-free diet is greatly improved with support through prescriptions to gluten-free staples and access to dietetic services.

And it’s not just us who support prescribing:

The British Dietetic Association (BDA) supports Coeliac UK’s efforts to maintain gluten-free products on prescription; removing them completely would be a mistake. Not only does NHS England risk impacting disproportionately upon the most vulnerable patients with coeliac disease, they may actually increase costs in the long term. The BDA will also be highlighting more effective alternative models for prescribing that place dietitians at the heart of the process while maintaining an appropriate standard of provision for patients.

What’s the problem?

A considerable number of local NHS commissioning groups have now restricted or withdrawn access to gluten free staple foods for patients with coeliac disease. See our prescriptions map for the most up to date news on what’s happening.

We are concerned that these changes risk non-compliance with the gluten free diet, which increases the risk of long term health complications for patients, and costs to the NHS. We are also concerned about the lack of safeguards being put in place to monitor any changes in patient outcomes following changes to NHS support, such as monitoring or reviewing dietary adherence or health complications.

What is the truth about cost?

Many health commissioners are stating that gluten-free food is readily available and that costs of gluten free food has come down. This is simply not true. Gluten free products are usually smaller and so gram for gram, they are 3-4 times more expensive which is a real issue for people with coeliac disease.

See our tables below for a comparison between gluten-free and gluten-containing loaves of bread:

Gluten-free loafPrice per 100gPrice per loaf
Tesco free from white sliced (400g) £0.38 £1.50
Tesco free from fresh bread (550g) white or brown £0.36 £2.00
Asda free from white sliced bread (400g) £0.38 £1.50
Sainsbury's free from white sliced (400g) £0.38 £1.50
Sainsbury's free from brown sliced (400g) £0.50 £2.00

 

Gluten-containing loafPrice per 100gPrice per loaf
Tesco everyday value bread (800g) white or brown £0.04 £0.35
Tesco bread (800g) white or brown £0.06 £0.50
Asda Baker's Selection bread (800g) white or brown £0.06 £0.50
Asda Extra Special Farmhouse loaf (800g) white or brown £0.11 £0.85
Sainsbury's basics bread (800g) white or brown £0.04 £0.35
Sainsbury's bread (800g) white or brown £0.06 £0.45
Sainsbury's bread (800g) wholemeal £0.06 £0.50
Waitrose essential bread (800g) white or brown £0.06 £0.50
Waitrose sliced white bread (800g)  £0.13 £1.00

Note: for Morrisons and Waitrose customers there is not an own brand gluten-free version. Genius bread (gluten-free) is available at  £2.70 for a 535g loaf (£0.51 per 100g) or Warburtons gluten-free is available at £3.00 for a 560g loaf (£0.54 per 100g)

Data pulled 10 March 2017

What is Coeliac UK doing?

We have requested a meeting with Simon Stevens, Chief Executive of NHS England, to discuss the proposals announced as part of the consultation and we are working on our response which we'll share once it is ready.

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.  Read the full transcript of the debate.  

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. See our media centrefor the latest press releases we have issued.

We need you

But we can't do this without your help. Get involved with the campaign and help us retain this vital support.

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