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Edenbridge project update – July 2018

You said we did: Gluten-free food prescriptions

User AvatarPosted by Paul Davey at 06/12/2017 16:15:15

Routine prescriptions for gluten-free food in west Kent

We would like to thank everyone who took part in our consultation over the winter about our proposal to stop routine prescribing of gluten-free food.

At our Governing Body meeting on 25 July, NHS West Kent Clinical Commissioning Group (CCG) decided that, from 1 September 2017, gluten-free food will no longer be routinely prescribed for people with coeliac disease and other gluten-sensitive illnesses in west Kent.

NHS funding will continue for gluten-free products for people with Phenylketonuria (PKU) who need specific low protein food.

We know this will be disappointing to many of the people in west Kent with coeliac disease and we would like to assure you that ending the prescribing of gluten-free food is not a decision we took lightly.

When making our decision, we weighed up whether the money spent on gluten-free prescriptions can be spent on other services without having a significant impact on the health of those affected, and took into account people’s views gathered through consultation.

We were also very aware that it is our statutory duty to do the best we can for the whole of our population with the money we have available. With a limited budget and an increasing demand for services, we at NHS West Kent CCG are evaluating every service we pay for and making decisions about the best value for all our patients.

An assessment carried out by the CCG showed that the top users of NHS prescriptions for gluten-free foods are those people with coeliac disease who are in the most affluent ten per cent of our population. The least affluent ten per cent get the fewest prescriptions.

About one per cent of the population of the UK has coeliac disease. This works out at about 4,600 people in west Kent. Of the total number with coeliac disease, it is estimated that about a quarter have a clinical diagnosis. This indicates that about 1,150 people may currently be eligible for gluten-free food on prescription in west Kent.

The gluten-free items currently available on prescription in west Kent are fresh and long-life bread, flour mix, plain savoury crackers, pasta and pure oats breakfast cereal.

Between January 2016 and December 2016, 10,026 gluten-free prescription items were prescribed by the 61 GP practices in west Kent at a total cost of £137,343.


The NHS started prescribing gluten-free food such as bread and flour for patients 30 years ago, when such products were not readily available in the shops in the way they are now.

There are also several conditions which require specialist diets as part of the treatment (for example, lactose intolerance or nut allergies). Coeliac disease and gluten-sensitive illnesses are the only ones to routinely receive specialist diet foods on prescription.

West Kent consultation

A two month consultation was undertaken from 29 November 2016 to 29 January 2017. It comprised a survey, a public meeting, attendance at two local Coeliac UK coffee mornings and stands at five public roadshows in shopping centres across the west Kent area. It was broadly promoted through a press release, which led to coverage on BBC Radio Kent, and emails  to Health Network members, Healthwatch Kent, and printed materials at children's centres, care homes, children's clubs, community centres, councillors, education contacts, faith groups, churches, Gypsy and traveller sites, leisure centres, libraries, MPs, opticians, parish councils, community pharmacies and PPG chairs. A poster promoting the consultation was sent to local government Gateways, GP practices and hospital waiting rooms.

During the consultation process, NHS West Kent CCG received 505 responses through the online or paper survey. Another 41 people were engaged with at the public roadshows, one public meeting and two local Coeliac UK coffee mornings. Three letters and emails were received from the public and three from organisations.

The consultation document outlined the proposed changes and the rationale for the change. It asked a series of questions about the level of support for the proposal and if any exemptions should be made if the proposal is accepted by NHS Went Kent CCG. It also explored whether those respondents with coeliac disease or caring for those with coeliac disease would have problems affording and accessing gluten-free products if prescriptions were to cease.

Of the 505 people (patients, carers and the public) who responded to the online survey for our consultation, 59 per cent had coeliac disease or were carers for someone with coeliac disease.

Overall, 55 per cent of those who responded agreed at least in part with the CCG’s proposal to stop the routine provision of gluten-free products on prescription:  29 per cent agreed routine prescriptions should be stopped completely; 26 per cent thought there should be some exemptions if they were stopped; and 46 per cent thought routine prescribing should continue. (Numbers do not add up to 100 per cent because of rounding.)

National consultation

The Department of Health is currently evaluating the results of its own consultation on the availability of gluten-free foods on prescription, which closed on 22 June 2017. Because of the unprecedented savings needing to be made by the CCG in the current financial year, we have taken our decision before the outcome of the national consultation is known. We will, of course, take any national guidance on this matter into account, as and when it becomes available.

As with any CCG decision, health professionals can make individual funding requests on behalf of patients whose case is clinically exceptional.

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