Coeliac Disease

Kevan Jones Excerpts

Wednesday 7th September 2011 Westminster Hall

[Gordon Banks]

My hon. Friend is right. The range has improved, as indeed has the quality of food. In some ways, perhaps I was fortunate to be diagnosed in the past 10, 12 or 13 years. I am glad that I was not diagnosed 25 years ago, because I did not have to eat the rubbish that one had to eat 20 or 25 years ago to try to survive on a gluten-free diet. There is more choice. That is another issue about which we have concerns following the introduction of new regulations. We are worried about how supermarkets will react, because everything that they do is driven by the desire and the need to make profit at the end of the day.

I want to talk about my own experiences without being too graphic. In the early 1990s, feeling unwell I went to my GP, who eventually referred me to a specialist. After having cameras inserted everywhere, I was diagnosed with duodenal ulcers and put on medication. Unsurprisingly, that did not help much. I was then diagnosed with the catch-all complaint of irritable bowel syndrome. I endured a number of years where my routine comprised of largely being locked in the toilet until about 11 o’clock in the morning, and I had a rash on my face that looked like I had exfoliated with 80-grit sandpaper. I returned to my GP after a number of years and he referred me to another specialist who, simply on reading my notes, said, “I think I know what’s wrong with you. I think you have coeliac disease,” and he was right. If my memory serves me right, his name was Dr Wright and he turned out to be a bit of a wizard in the diagnosis of coeliac disease in the Forth valley and Scotland. I and others will be eternally grateful to him for that.

Hon. Members might be wondering why there has been a personal lesson from me and whether it is designed to foster sympathy. No, it is not. It is designed to highlight the fact that, as I have said, the average time for diagnosis in the UK is 13 years. That is sometimes 13 years of not being able to work; 13 years of worry about dying; 13 years of someone worrying that their wife thinks they are dying; and 13 years when the only people who are happy are the manufacturers of toilet roll. Part of the purpose of today’s debate is simply to stress that that is not good enough. Much more needs to be done to recognise coeliac disease and the array of symptoms in people presenting to a GP. They should not be told what my GP said to me when I returned to him after being diagnosed: “Oh coeliac disease. I never think of that. That’s two I have missed this month.” That is not good enough.

Why is it important to improve diagnosis times? It saves being given expensive drugs for other complaints that are totally unnecessary and, as I said, it saves a sufferer from not being able to lead anything like a normal life in all areas of work, rest and play. Early diagnosis reduces the risk of intestinal cancer, bowel cancer and osteoporosis among other things. In effect, early diagnosis saves not only lives, but money.

There is no cure for coeliac disease, which leaves the NHS with the task of managing sufferers’ condition. For me, diagnosis happened in my early 40s. However, that is not good enough and there remains a lack of guidance in the area. In 2009, the National Institute for Health and Clinical Excellence published guideline 86 on the recognition and assessment of coeliac disease. That short clinical guideline offers best-practice advice on the recognition and assessment of coeliac disease and the care of those undergoing diagnosis. Although that guideline was a great result for people with coeliac disease, it is not mandatory to follow it and more needs to be done.

Coeliac UK—the national charity for people with coeliac disease—has worked with NICE on that guideline, forming part of the guideline development group. It is anxious to take the matter further for very good reasons. Gastrointestinal disorders account for about 10% of NHS clinical work, and there is evidence that they are not always well managed in general practice. Few quality criteria are available to guide the management of such disorders. The treatment of coeliac disease requires support, with a gluten-free diet, the monitoring and management of symptoms and the screening and management of complications and other associated conditions for the rest of the patient’s life. There has been huge oversight on the part of the Department of Health, as GPs are struggling to meet targets for diagnosing conditions on the quality and outcomes framework and, with no points for gastroenterological conditions, there is an enormous gap.

The QOF is a key way to ensure that GPs are incentivised and is a means by which we could start to see an improved and accelerated rate of diagnosis and find the 500,000 people who are living with the condition but who do not know it. Sadly, a number of applications to QOF have been unsuccessful, which is not good news for people with coeliac disease.

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

There is also some evidence that the condition is hereditary, so testing family members of a diagnosed coeliac is an obvious way to identify such individuals. If doctors diagnose somebody as coeliac, would my hon. Friend suggest that other family members should also be tested?

[Gordon Banks]

I do and I will. I shall come on to that later. My hon. Friend is perfectly right.

Moving back to the QOF, approaches for groupings of gastroenterological conditions are being made. Those are important because coeliac disease is four times more prevalent among patients with clinical presentation of IBS, as in my case, than among the non-IBS population. There is also a NICE guideline that recommends the screening of patients with type 1 diabetes, but we do not know whether that screening is taking place. Without more stringent ways to incentivise and measure, we will not know.

As my hon. Friend says, screening family members when coeliac disease is present in the family is also a key concern. He might be interested to know that prevalence rates increase from one in 100 to one in 10 when a first degree relative has the condition. GPs should be screening, but we know that that is not happening routinely. I know full well is has not happened in my family, but it should. Coeliac disease is also more prevalent in people with other auto-immune conditions such as type 1 diabetes, as I have mentioned, and auto-immune thyroid disease. Hence, antibody testing for family members where coeliac disease has been diagnosed and for patients with autoimmune conditions is recommended by the NICE coeliac recognition and assessment guideline.

The Minister will be glad to hear that improving diagnosis is only one part of the answer; we also need improvement in the management of the condition after diagnosis. There are established clinical guidelines from, among others, the British Society of Gastroenterology, the British Society of Paediatric Gastroenterology, Hepatology and Nutrition and the Primary Care Society for Gastroenterology, which recommend an annual review for patients with coeliac disease and, indeed, dermatitis herpetiformis. Although that has traditionally been undertaken in specialist clinics in secondary care—or, indeed, not undertaken at all—it is an activity increasingly seen as suitable for primary care. We know of locally enhanced services where practices provide a structured annual review, but there are not enough of them. We would like annual reviews to be put more firmly into place to ensure that patients are complying with the gluten-free diets and safeguarding against potential associated conditions.

The improving management in gastroenterology—IMAGE—project provides a model for the development of quality markers for chronic disease management including coeliac disease. The project has developed patient-centred quality criteria based on current guidelines and has already been a source of a range of published papers, but health inequality is also a key concern in this area. Research has shown that coeliac disease is twice as likely to be diagnosed for the least deprived quintile of socio-economic groups than for the most deprived; it is usually the other way around. There is more work to be done to understand those results, but the working hypothesis is that the disease is under-recognised in the most deprived socio-economic groupings as a result of the wide-ranging nature of symptoms and, indeed, access to health care.

Where do we go from here? The NICE guidelines on recognition and assessment of coeliac disease showed that the “no diagnosis” strategy is the least effective strategy because of the low quality of life of patients and the costs resulting from undiagnosed coeliac disease. In applying accepted NICE thresholds, any testing strategy was shown to be more cost-effective than no testing strategy, despite the costs of the tests. Work also indicates that serological testing for coeliac disease in patients with symptoms such as irritable bowel syndrome, as I mentioned earlier, is, indeed, cost-effective.

The new NHS reforms may provide some opportunities for people with coeliac disease and provide different ways for them to be catered for within the new framework. Perhaps the Minister can say whether coeliac will be considered for one of the 150 quality standards soon to be rolled out, so that we can see diagnosis rates start to improve.

As I have said, once diagnosed, the only way forward is to manage the condition through a gluten-free diet. Many people do that through relying on prescriptions as the foundation of their condition management. On prescriptions, as the NHS looks to drive costs down during the past 12 months, a number of PCTs have placed strict limits on what can be prescribed for patients with coeliac disease. Those cuts, which include a blanket removal of almost 200 products prescribed to patients in Surrey, East Sussex and Kent, appear to be a knee-jerk reaction to costs linked to gluten-free foods on prescription. At the same time, they potentially threaten the long-term health of people with coeliac disease.

Hon. Members may have seen that, in July, a story broke in the national press that gluten-free bread on prescription was costing the NHS in Wales £35 a loaf. The story came from misinterpreted data following a question posed in the Welsh Assembly. Similar anecdotal figures had been used earlier in the year by medicine management teams linked to the south-east strategic health authority. Although the figures given in the national media were incorrect, sadly the story missed the real point about some high administrative charges added to a very small number of products, which appear to be unjustified.

--- Later in debate ---

[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.

[Dame Anne Begg]

My hon. Friend may agree that if one tells an organisation that is providing a sandwich lunch that one wants a gluten-free sandwich, it always seems to provide the worst possible gluten-free bread, without the same filling as everyone else. One is given processed cheese or a bit of cold ham, and looks lovingly at the filling in everyone else’s sandwiches. Not only does one get the worst bread in the world, one gets the worst filling in the world, when it would have been easier to take out the original filling and put it on a plate to make quite a good salad.

[Dr William McCrea (in the Chair)]

Order. Time is passing, and the Opposition Front Bench spokesman and the Minister must make their winding-up speeches, so perhaps the hon. Gentleman will draw his comments to a close.

[Mr Jones]

I agree with my hon. Friend. When I was a Minister, it took at least six months to convince those in my private office at the Ministry of Defence that I did not want a salad whenever I went anywhere.

I congratulate the House authorities on the steps that they have taken in the House of Commons to provide gluten-free products, including meals, and to put the crossed grain logo on menus and so on to inform people. I hope that the House of Lords will eventually follow the same principle. That shows that it is possible for catering establishments to provide for people who need a gluten-free diet, and the House of Commons should be congratulated. There are some important issues to consider, and I hope that today’s debate has raised awareness about people who suffer coeliac disease, and provided some practical suggestions, which I hope the Minister will consider.