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Campaign to protect prescription services in England

Over a third of Clinical Commissioning Groups (CCGs) in England are now restricting or withdrawing access to gluten-free staple foods for patients with coeliac disease.

We have challenged CCGs to tell us how these proposed changes will improve the quality of care and health outcomes for patients and we have been told that difficult decisions are being made because of financial pressures.

Our concern is that this trend is set to continue and we are campaigning to make the case for gluten-free prescribing so that decisions on services can be made in terms of patient need with robust evidence, rather than focusing on short term budget savings.

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, and 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.

What’s the problem?

To date, our work indicates that over a third of CCGs in England are now restricting, or withdrawing altogether, 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.

The Health and Social Care Act 2012 highlights the importance of consultation with patients about local services and in particular changes to services. We are aggrieved that in some areas little or no consultation has occurred. We are also concerned about the lack of safeguards being put in place to bolster the gap when services are removed, such as monitoring or reviewing dietary adherence or health complications.

What is the truth about cost?

Many CCGs are stating that gluten-free food is readily available and that costs of gluten-free and gluten-containing foods are now equitable. 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 sliced (400g) white or brown £0.50 £2.00

 

Gluten-containing loafPrice per 100gPrice per loaf
Tesco everyday value bread (800g) white or brown £0.05 £0.36
Tesco bread (800g) white or brown £0.06 £0.50
Asda Baker's Selection bread (800g) white or brown £0.06 £0.50
Asda chosen by you (800g) wholemeal £0.09 £0.75
Sainsbury's basics bread (800g) white or brown £0.05 £0.40
Sainsbury's bread (800g) white or brown £0.06 £0.45
Waitrose essential bread (800g) white or brown £0.06 £0.45
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  £2.83 for a 535g loaf (£0.53 per 100g) or Warburtons gluten-free is available at £3.00 for a 560g loaf (£0.54 per 100g)

Data pulled 12 September 2016

What is Coeliac UK doing?

We are contacting all CCGs to make the case for gluten-free prescribing and ensure 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 using 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 fight for this vital service.

We are also working with policy makers and we have produced a briefing note for MPs and on 1 November there was a Westminster Hall debate in the House of Commons, secured by Kevan Jones MP for North Durham and chairman of our Cross Party Group on coeliac disease, who is working with us on the issue of gluten-free food on prescription.

There was good attendance by MPs who all seemed armed with personal stories from people with coeliac disease, these contributions made for a good debate and intervention on behalf of those with coeliac disease. Read more about 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 centre for 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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