Coeliac Disease

Debate between Gordon Banks and Simon Burns

Wednesday 7th September 2011 Westminster Hall

[The Minister of State, Department of Health (Mr Simon Burns)]

May I say what a pleasure it is to serve under your chairmanship again, Dr McCrea? I will begin with some congratulations and an apology. The congratulations go to the hon. Member for Ochil and South Perthshire (Gordon Banks) on securing this debate and on raising the issues faced by people living with coeliac disease. It was genuinely fascinating to listen to him speak about a long-term condition that, as was mentioned by other hon. Members, is unknown to a vast majority of people in this country. To hear at first hand about the day-to-day living of someone with that long-term condition was extremely interesting and illuminating.

The question of illumination is where I get to my apology. I must apologise to the hon. Gentleman because I am afraid he got the monkey rather than the organ grinder this afternoon. As he will know, the Minister of State, Department of Health, my hon. Friend the Member for Sutton and Cheam (Paul Burstow), is the lead Minister in the Department for issues such as coeliac disease and other long-term conditions. As the hon. Gentleman will understand, deliberations on the Health and Social Care Bill are reaching their concluding hours on the Floor of the House of Commons as the legislation approaches Report and Third Reading. The Minister of State’s debate on Report clashed with this debate in Westminster Hall, so I am an inadequate stand-in for him. I assure hon. Members, however, that I will draw his attention to a number of points that have been raised this afternoon, and I know that he will be interested to read the debate tomorrow. If there are other issues that he needs to answer, I will make sure that he does so. In the time available, I will try to respond to as many points raised by hon. Members as I can. If time does not allow all those points to be answered, I will ensure that they receive a letter to clarify any outstanding issues.

For those hon. Members who are not aware of coeliac disease—I know that there are none in the Chamber today, but I am sure that there will be some MPs who follow health issues assiduously in Hansard but who are not as knowledgeable as those present in the debate—let me say that the disease is a common condition that affects approximately one in every 100 people in the UK. Rather surprisingly, women are two to three times more likely to develop the condition than men, although there seems to be no apparent reason for why that should be the case. Cases of coeliac disease have been diagnosed in people of all ages, as the hon. Member for North Durham (Mr Jones) mentioned when illustrating one of his points. It is therefore crucial that information, education and support are available for individuals as well as the other people involved in their lives, such as parents, teachers, carers, employers and others.

There is only one clear path to get properly diagnosed—again, early diagnosis was another theme that was echoed by all three hon. Members who took part in the debate. That is an extremely important issue. The points that hon. Members raised in making the case for early diagnosis are unanswerable. It is crucial. However, as they will know, getting a proper diagnosis requires a blood test and endoscopy with biopsy. We of course welcome any new tools that can help to get more people diagnosed. However, it must be recognised that pinprick self-testing kits do not replace a medical diagnosis. Indeed, for a definitive diagnosis, it is important that people have not already taken gluten out of their diet as a result of self-diagnosis, because that can lead to the diagnostic tests being inconclusive, with all the unfortunate results that that has.

Anyone experiencing symptoms of coeliac disease should seek the advice of their doctor to get a proper diagnosis and professional dietary advice on how to manage their condition. We must ensure that people living with coeliac disease get the best clinical advice and support available, that they are involved in decisions about their care and that they are fully supported to make informed choices.

The hon. Member for Ochil and South Perthshire said, “Why not use the QOF?” With regard to the testing of people and of members of their family to see whether they may have the disease, we believe that it is up to people to raise any concerns that they have as a result of a family member having the disease, and that is likely to result in a test for coeliac disease for those people.

I think that the hon. Gentleman specifically asked—I hope that I have got this right—when or if there would be NICE guidelines. On that issue, I have what I hope is some rather good news for him. There are already NICE guidelines on diagnosis and recognition. They were published on 27 May 2009. The reason that the guidelines were drawn up is that they were part of a determined campaign in the NHS and, to be fair, by the Government of the day to improve recognition of the disease and to increase the number of people diagnosed with it.

[Gordon Banks]

I am well aware of what the Minister is referring to; indeed, I alluded to it in my contribution. What I am saying is that there is now an opportunity through the QOF framework to make coeliac disease one of the 150 measurable outcomes for GPs to be measured against.

[Mr Burns]

I am grateful to the hon. Gentleman. He makes a perfectly reasonable point. I will certainly ensure that his comments are drawn to the attention of NICE, because of course it will be NICE, working with the Department of Health, that draws up the list of conditions. That is apart from the standards that it is already working on. As the hon. Gentleman said, between 150 and 180 are being considered. I will ensure that his comments are drawn to NICE’s attention.

[Gordon Banks]

With regard to the points that the Minister has made, which I did allude to, those are not mandatory, enforceable measurements. That is why we need something more.

--- Later in debate ---

[Mr Burns]

I am grateful and I will ensure that the hon. Gentleman’s recommendation and the points associated with that are drawn to the attention of the relevant bodies, so that they can be considered as NICE considers its programme for the standards.

The question of managing coeliac disease in the NHS featured in a number of contributions today. The NHS is best placed to determine and manage its services locally, supported by clinical guidelines and close community and partnership working. The NICE guidelines on recognition and diagnosis of the condition are supported by prescribing guidelines for professionals on prescribing gluten-free foods, developed in association with the British Dietetic Association, the Primary Care Society for Gastroenterology and Coeliac UK.

The NHS also has to ensure that the resources that it has available are used to greatest effect. That is another theme that I think was developed by all three hon. Members who took part in the debate. Some of the comments concentrated on the question of prescriptions. One area in which spending needs to be more effective in order to meet rising demand for services is prescribing, as hon. Members said. A range of programmes is in place to try to reduce the money spent on prescribing drugs, and the review of gluten-free food prescribing is part of that process.

Discussions are taking place throughout the country on that matter. In the south-east—the hon. Member for Ochil and South Perthshire referred to this—a review was conducted of gluten-free prescribing policies across the region. That was led by medicines management leads, who are pharmacists, from the different counties. They made recommendations that caused concern to some patients. However, as a result of their subsequent discussions with patients and, indeed, the role played by Coeliac UK, a number of changes are to be made to their original proposals. I will add that GPs are not prevented from such prescribing if specific patients are considered to have a special clinical need. I hope that that reassures the hon. Gentleman.

It is a matter for doctors’ clinical judgment which products they prescribe for their individual patients. They are not prevented from such prescribing if patients are considered to have a special clinical need. We fully expect GPs and other health professionals who prescribe gluten-free products to assess the dietary requirements of individual patients, taking into account not only their nutritional requirements but their lifestyle and other needs. We expect the provision of food items to be based on individual needs, not on a preconceived idea of what someone ought to receive.

We believe that patients stand to benefit from the modernisation of commissioning, as that will enable GPs to focus resources to meet the local needs of their population and enable local people to be involved in shaping services that are crucial to them. It will be for consortia to determine how they organise themselves to commission services for patients affected by coeliac disease. The new arrangements in the NHS are designed to ensure that GPs are in the driving seat on commissioning services for their local population.

[Gordon Banks]

In my contribution, I spent a considerable amount of time talking about pharmacy-led prescribing. The Minister has gone around the houses on that; he has not really addressed it directly. In the last two and a half minutes of the debate, could he deal with it in a little more detail?

[Mr Burns]

I am planning to come to that, but first I want to deal with another issue that the hon. Gentleman raised—food labelling. I will then move on to prescribing. If I run out of time, I will ensure, as I promised, that I write to him.

Food labelling is crucial to patients’ quality of life, and improvements have needed to be made. The coalition Government want to see health and social care provided in a way that achieves better outcomes and delivers personalised services, focused around individuals, not organisations, and ending up with care and support that is of a higher quality and safer than ever before.

For people living with coeliac disease, having the right information about the gluten content of food is crucial. That has certainly emerged in the course of this debate. Prescribed foods represent a small proportion of an individual’s diet. People with coeliac disease buy most of their food from high street shops, like everyone else. It is therefore important that food labelling is comprehensive and reliable. It has got better in recent years, particularly in supermarkets, which the hon. Member for North Durham mentioned, and in some restaurants—although there is a long way to go—as more and more people become aware of the condition. Indeed, a wide selection of gluten-free foods is now available at supermarkets. That was not the case 10 years ago.

New labelling requirements introduced in January 2009 for full implementation on 1 January next year are designed to reduce confusion and to help people with coeliac disease to make safer choices about the food that they eat. The legislation sets out new low limits for gluten in foods making “gluten-free” and “very low gluten” claims, so that consumers can understand how much gluten there is in the foods that they buy. The Government are working with industry, health professionals and Coeliac UK to provide advice for consumers on what the new legislation means for them.

As I am running out of time and sadly have not been able to cover all the points, I give hon. Members a categorical assurance that they will receive a letter answering in detail the outstanding points that they have validly raised during an extremely interesting and high-quality debate.