Coeliac Disease

Simon Burns Excerpts

Wednesday 7th September 2011 Westminster Hall

[Mr Kevan Jones (North Durham) (Lab)]

I congratulate my hon. Friend the Member for Ochil and South Perthshire (Gordon Banks) on securing the debate. I also thank Coeliac UK for its work in campaigning and research, and the information that it gives to many thousands of individuals who are diagnosed with coeliac disease.

I have two interests to declare. I am the chair of the all-party coeliac disease group and, as my hon. Friend the Member for Ochil and South Perthshire said, I was diagnosed with coeliac disease nearly 10 years ago. I want to reiterate a point that my hon. Friend made, which is that what we are discussing is not the latest fashionable diet, or a lifestyle choice: it is a medical condition. Sometimes it seems from media coverage, and media understanding of the gluten-free diet, that people have a choice whether to eat foodstuffs containing gluten. We do not have that choice, because of the serious health conditions that my hon. Friend has already mentioned. It is important to ensure awareness and wider understanding, including among GPs.

It is worth reflecting on how people are diagnosed. I was diagnosed 10 years ago, at the age of 37. Did I know I was intolerant to gluten? No, I did not. It was only following a serious stomach operation that the consultant who treated me did tests and biopsies, and said, “You do realise that you are suffering from coeliac disease.” Had I heard of coeliac disease? No, I had not. As with all such things, people learn quickly. I have heard stories from talking to many members of Coeliac UK regional groups—and I thank the volunteers who run local groups for providing information. More often than not, the people I have talked to received mistaken diagnoses. Awareness among consultants, as well as GPs, is an issue.

One may ask what the average age of a coeliac is, but there is not one. I have met parents whose children became ill soon after they began eating food, by two and three years old. My 71-year-old mother was diagnosed only last year, and that was only because I asked her to insist that her doctor tested her for it. Interestingly, many of the complaints and health issues that she has had over many years were explained by coeliac disease, and the diagnosis has changed the way she feels. Awareness is important, therefore, not just in the wider population, but among GPs, to ensure that they ask the questions to find out whether a patient’s symptoms are down to coeliac disease—and the symptoms can be quite varied, as my hon. Friend the Member for Ochil and South Perthshire said.

I do not think that matters have been helped in the past few months by press coverage of prescription charges. Some of the debate is ill-informed. Earlier in the year a headline in The Sun ran: “NHS pays £32.27 for a loaf of bread”. As my hon. Friend has mentioned, if the story had been looked into, it would have been found that the sum was paid not for one loaf of bread, but for a number of products. However, there are underlying issues, which can be remedied by some of my hon. Friend’s suggestions. Nevertheless, the entire tenor of the article was that people are somehow getting free food on the NHS—not just loaves of bread but biscuits, cakes and things like that, which is not the case. Gluten-free products are a very expensive part of the household budget, certainly for families with more than one person affected. I do not get products on prescription, but purchase them. My hon. Friend the Member for Aberdeen South (Dame Anne Begg) is right; the range of products available now is far wider than when I was diagnosed. As for the idea that people are getting foods free, as has been said, they are not: if they receive them on prescription they will pay for that anyway. Many people do not choose to take anything in that way.

The reaction to the publicity, and the pressure on NHS budgets to secure value for money, which we would all support, has been a knee-jerk reaction to go the other way and reduce the number of products that people can get. That is not acceptable for low-income families and those who rely on gluten-free products on prescription. My hon. Friend the Member for Ochil and South Perthshire talked about a cost of about £400 a year, but in some cases it could be more, depending on how many affected people there are in a family. It has been recognised that the condition is not a fad or lifestyle choice, but a disease that needs treatment; and proper management can save the NHS money. People will not present at GPs’ surgeries with undiagnosed conditions. They can live perfectly well with the condition if it is properly managed; and my hon. Friend might agree that in some cases that improves health, because the diet is quite healthy—including, in my case, not being able to drink beer.

There has been a knee-jerk reaction from some PCTs. Is it acceptable that arrangements with suppliers are costing the NHS money? No—and I think that the Cumbrian and Northamptonshire examples are a way forward. If we encourage PCTs to adopt the approach of having prescriptions managed by the pharmacist, not only will the NHS save a lot of money, but that will be better for people who suffer from coeliac disease than going to the doctor for a prescription. I have talked to my GP about it, and doctors do not really review what is on the prescription. They just keep signing it. At least if the process happens in the pharmacy, the pharmacist, who knows the people involved, may review the quantity or type of products that the individual wants. I think that it would reduce the possibility of people getting the same prescription repeatedly, whether they need it or not. The pharmacist would be able to manage things. If someone has a prescription for eight loaves, but does not need them, why keep paying for them?

The examples and pilots in Cumbria and Northamptonshire show that not only can costs be driven down, but the service to the patient can be improved. There is an easy win there, and Coeliac UK and pharmacists are quite keen on the idea, and so are GPs, because it would cut the person hours taken up in writing the prescriptions. The pilots provide good instances of how GPs’ time is freed up. I urge the Government to look seriously at that, and consider how such best practice can be moved across. Quite rightly, when there are lurid headlines about people paying £32 for gluten-free bread, on top of the actual costs, that is not acceptable. If we can do something to reduce that problem, it would be good. We need to see more positive and constructive articles. To be fair, the Daily Mail in its health section has carried quite a few good articles about coeliac disease, explaining its symptoms, and promoting the suitable food that is available.

Some quick wins are available for the Government and the NHS, if they are allowed to take them on board. As chair of the all-party group, I would like the Minister to attend a meeting if that could be fitted into his diary commitments, and to meet the members of the group and others from around the country.

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

I am grateful to the hon. Gentleman, and it would be extremely useful to attend such a meeting. However, he may wish to invite the Minister of State, Department of Health, my hon. Friend the Member for Sutton and Cheam (Paul Burstow), who is the lead Minister on this medical condition.

[Mr Jones]

I am disappointed about that, because I was looking forward to the right hon. Gentleman’s attendance. He is a good friend, but I will obviously leave it to the Department to decide who is the best person to come, and we will certainly issue that invitation in the next few days.

I want to pick up some of the issues that my hon. Friend the Member for Ochil and South Perthshire raised, including the products that are available. My hon. Friend the Member for Aberdeen South was right when she said that products have changed remarkably in the last 10 years from bread like cardboard that was hardly edible without a pint of water to some very good products on the market now. It is interesting that on the commercial side, large bread manufacturers such as Warburtons are producing gluten-free bread, so it obviously sees a market. I have tried its bread, and it is very good. Likewise, the invention of products such as Genius bread has completely changed the type of bread that is available, and the technology for producing it.

The supermarkets have also changed. Asda, Tesco and Sainsbury’s in particular have done two things. First, they have shelving dedicated to gluten-free products, which is important. Secondly, labelling has changed, which is important for people who suffer from coeliac disease, because it is amazing how many products contain gluten. Some flavours of crisps contain gluten, but others from the same producer do not. Correct labelling is important for all products so that people may buy with confidence, and see that the products that they are buying are gluten-free. It is important that the supermarkets recognise that there is a large and growing market for such products, so anything we can do to encourage better labelling of food content is important.

My hon. Friend referred to eating out, which can be difficult, although some restaurants recognise the problem of gluten in certain foods. However, the bane of my life is organisations that provide food on airlines and National Express, on which I sometimes travel. The people serving the food have no understanding of what a gluten-free diet is, and offer everything from sandwiches to sausages. When asked whether those foods contain gluten, they look blank.

The other reaction, which one gets from British Airways and which is amazing, is that whenever one asks for a gluten-free meal it thinks that that means vegetarian. I am not sure why, but it seems to think that one can eat what everyone else eats, but without the sauce. It seems to think that coeliacs are vegetarians, and my usual response is to ask whether I look like a vegetarian. There should be a campaign to persuade airlines and train companies that provide meals to ensure that their staff know what a gluten-free diet is. They could also be more imaginative about what they provide, because it is often inedible.

--- Later in debate ---

[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.