Coeliac Disease

Gordon Banks Excerpts

Wednesday 7th September 2011 Westminster Hall

[Gordon Banks (Ochil and South Perthshire) (Lab)]

It is a pleasure to serve under your chairmanship, Dr McCrea, on an issue that is close to my heart or, perhaps I should say, to my small intestine, because I suffer from coeliac disease. I am also a member of Coeliac UK.

Coeliac disease causes damage, through gluten, to the surface of the small intestine and results in a reduced ability to digest and absorb food. This causes malabsorption of essential nutrients such as iron, folic acid and calcium. In infants and children this can result in health problems such as faltering growth, unexplained anaemia, chronic diarrhoea and abdominal distension. In childhood, the presenting features are often relatively subtle and it is much easier to diagnose if coeliac disease is on the radar with a GP at an early stage. For adults, coeliac disease often presents with symptoms of tiredness, reduced appetite, weight loss, mouth ulcers, abdominal bloating, diarrhoea and anaemia.

Many people with coeliac disease present with apparently mild or non-specific complaints, but from their perspective these complaints are anything but trivial. The type and degree of symptoms with which an individual presents are not always directly related to the gut damage that has been done. It can therefore be difficult to secure a diagnosis, and patients may present to primary care on a number of occasions with a large range of symptoms before any diagnosis is made.

Health risks linked to untreated coeliac disease include poor growth in childhood, osteopenia, osteoporosis, infertility, and an increased risk of non-Hodgkin’s lymphoma, Hodgkin’s lymphoma and intestinal malignancy. Other auto-immune conditions are also associated with coeliac disease. The prevalence of auto-immune thyroid disease in people with coeliac disease is up to 7%, and the prevalence of type 1 diabetes is between 2% and 10%. With all these complications, it is hard to understand why coeliac disease is not routinely checked for.

People can endure long periods of suffering before they are diagnosed, and the most recent research shows the time from the onset of symptoms to diagnosis as a lengthy 13 years, during which people are at risk of contracting a wealth of other conditions. One in 100 people in the UK have coeliac disease, but only 10% to 15% of them are clinically diagnosed. An estimated half a million people in the UK are living with the condition but do not know it. That is too many people whose quality of life is being diminished by years of ill health. Many people are living with a misdiagnosis of irritable bowel syndrome or other gut conditions, and receiving treatment for those conditions that is not effective. That costs the NHS money, which we are told it does not have, and which is wasted because of the lack of a quick and accurate diagnosis of the gut condition.

[Dame Anne Begg (Aberdeen South) (Lab)]

Does my hon. Friend agree that it is possible to diagnose or find out whether someone has a gluten intolerance through a relatively simple blood test? Kits can be bought at a pharmacy, so there should be no excuse for failing to pick up coeliac disease earlier in many patients.

--- Later in debate ---

[Gordon Banks]

My hon. Friend is perfectly correct. The diagnosis for coeliac disease, or certainly the first part of the diagnosis, is extremely simple—it requires a simple blood test. In fact, as a coeliac sufferer, I never received a gut biopsy test, because my blood test was so overwhelmingly positive. It is relatively easy and the implementation of, or access to, these new tests, which are available in chemists, is a step in the right direction.

Simple though that may be, too many GPs do not recognise coeliac disease, never mind test for it, which is something that we urgently need to address. As I have indicated, it is first tested for via a simple blood test, followed by a gut biopsy. The blood test in itself is inexpensive. My hon. Friend has mentioned a test that the public can buy for only £20 in pharmacies. Within the health service, there is obviously an economy of scale.

I would like to describe some of the disease’s impacts in more detail, because it would be better for the Minister to hear it from the horse’s mouth rather than read about it on pieces of paper. When gluten is present in our diet, it destroys the villi in the small intestine. They are eroded so that the small intestine becomes basically like a garden hose. In good Scottish parlance, Dr McCrea, your food just scoots through it. As I have said, that prevents the absorption of nutrients, and the knock-on effects that that can have on young children and the elderly mean that this in itself—the pure lack of nutrients—can be life-threatening.

Gluten is a protein found in wheat, barley and rye. Although some might think that it is easy to avoid consuming such products, I would challenge them to try to do so for the rest of their lives. A gluten-free diet may sound like the latest Hollywood fad, designed to make a sylph-like body, but if that was the case I would want my money back, because it has not done that for me. The point that I am trying to make is that, while continuing to take gluten when diagnosed with coeliac disease has serious consequences for one’s health, diagnosis also comes with serious lifestyle trade-offs.

Imagine a busy day at work where all one wants to do is grab a quick sandwich from the cafeteria. I am sure that the Minister has eaten a sandwich at his desk many times. It cannot be done. Imagine the end of a long day at work when one would rather grab a take-away than cook dinner at home. That cannot be done either. Imagine an invitation from friends to go for a meal at an Italian restaurant. Although the pizza and pasta look nice, they just cannot be eaten. One may want to go to the pub and have a bottle of beer with friends, but that cannot be done either. One becomes an expert at reading the label on every piece of food that is bought, from crisps, sweets to soups—literally everything. Even Marks and Spencer’s diet coke has gluten in it.

I do not want to say much more about food lines at this point, but I want the Minister to think about the price of a loaf of bread. Tesco’s website states that an 800-gram loaf of white sliced bread can be bought for 47p, which is 6p per 100 grams. What does a loaf of gluten-free bread cost? It costs £2 for 400 grams, which is 50p per 100 grams—833% more. I will leave the Minister with that thought and return to it later.

[Dame Anne Begg]

I am glad that my hon. Friend has picked up the issue of gluten-free food, because I am also on a gluten-free diet, which is why—surprise, surprise—I am present at this debate. It is very expensive for people on gluten-free diets, but will my hon. Friend acknowledge that access to gluten-free products has improved immensely? Almost every supermarket now has some gluten-free shelves. I have seen a remarkable difference in the availability of gluten-free food during the four years in which I have been on a gluten-free diet. However, part of the problem is that the ready-meal versions of foods to which one would not add gluten if they were being cooked at home often include gluten, which makes it difficult for those who lead busy lives and do not have time to cook.

[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.

[Dame Anne Begg]

People with coeliac disease rely on a gluten-free diet, and the fact they can only get gluten free through a prescription suggests that management of the condition is seen very much as a medical model rather than a disability model, which is what normally happens when someone has a chronic condition and they have learned to live with it. Instead of providing gluten-free food through a prescription, might not the Government consider making it one of the criteria that would allow people to get the lower care rate of disability living allowance? That would give people the money in their hand and give them the choice to buy off the shelf, particularly now that most supermarkets have a range of gluten-free goods available. It is more expensive, so it would be an extra cost of their disability, but that might be a cheaper and better solution for the Government. I wonder whether Coeliac UK, or anyone else, has thought of that.

[Gordon Banks]

In fact, Coeliac UK, myself and, I think, my hon. Friend the Member for North Durham met Ministers in the previous Government to discuss that very issue. It does not seem to be something that Governments want to embrace, but my hon. Friend the Member for Aberdeen South (Dame Anne Begg) is right—there are other ways to skin the cat. I will discuss those when I talk about the method of prescribing.

Overcharging or excessive charges within the NHS prescription process need to be investigated at national level to hold NHS suppliers to account. It is crucial to patients and to the taxpayer that we implement a cost-effective service that gives the NHS real savings and enhances provision to patients.

As I have said, people with coeliac disease must avoid all foods that contain gluten, a protein found in wheat, rye and barley. Wheat is the most widely consumed cereal in the UK, so a gluten-free diet requires the elimination of staple foods including bread, flour, pasta and biscuits. Gluten is also found in cakes, pastries and in foods that one might not expect, such as many sauces, soups, soy sauce, ready meals and some cooked meats and sausages. Removing wheat, barley and rye-containing ingredients from the diet can therefore result in a restricted and potentially unbalanced nutritional intake. People with coeliac disease may obtain gluten-free specialist foods from a wide variety of sources including supermarkets, health food shops, mail order and, as we have mentioned, on prescription, but some of the gluten-free brands that are available on prescription are not available from other outlets. It is extremely important that health care professionals provide advice, support and information to ensure that people with coeliac disease have a nutritionally balanced and varied gluten-free diet. Diagnosis should not lead the patient down the path to other unnecessary problems.

Coeliac UK, the Primary Care Society for Gastroenterology and the British Dietetic Association have written guidelines to help health care professionals in prescribing gluten-free foods. The guidelines define different categories—children, male adults, pregnant women and the ages of patients—allocating each a number of units per month per group to maintain adequate nutrition. Each gluten-free product is assigned a number of units: for example, a 400-gram loaf of gluten-free bread is one unit and a 800-gram packet of gluten-free spaghetti is two units. The recommended amount of gluten-free staple food, in units, is based on the total carbohydrate intake providing approximately 50% of the energy intake, with gluten-free foods on prescription making up 15% of that total.

As I have said, coeliac disease is unique in that a specific and effective treatment is available in the form of a lifelong exclusion of gluten from the diet. Those who adhere strictly to a gluten-free diet can lead full, active lives—they can even become Members of Parliament—and are protected from the development of health risks associated with the untreated condition. Research by Hall and Rubin in 2009 shows that among adult patients with coeliac disease, adherence to a strict gluten-free diet is variable, with compliance ranging from 36% to 96%. The evidence also shows that following a gluten-free diet is particularly difficult for those patients with no obvious symptoms. Medical experts and research agree that access to a range of gluten-free food on prescription is important to support people with coeliac disease and to help them to maintain their nutritional needs.

Research undertaken by Coeliac UK, among the charity’s membership in 2006, suggests that access to gluten-free food on prescription is regarded as the most important factor for people with coeliac disease in terms of adherence to a gluten-free diet: nearly 87% cited it as an important factor in maintaining a gluten-free diet and 47% cited it as the single most important factor. A further survey on gluten-free prescribing undertaken by the charity in 2011 among 400 people with the condition showed that 60% of respondents rated gluten-free food on prescription as the most important way of obtaining gluten-free foods for their diet. Although people with coeliac disease have varying requirements for gluten-free foods, depending on their age, gender, occupation and lifestyle, having a wide range of specially formulated gluten-free products available on prescription and easily accessible is vital to promote strict dietary compliance.

On the cost of the gluten-free diet to the patient, having the disease does not entitle people to be exempt from prescription charges. People with coeliac disease in England are charged £7.10 per order unless they have a medical exemption due to different health conditions, age or financial circumstance—although they can use a pre-payment certificate, of course. Research from King’s College London earlier this year found that there is limited availability of gluten-free foods in different stores and that they are more expensive than their counterparts—I refer the Minister to my Tesco bread comparison. That finding has been supported anecdotally by stories from Coeliac UK members, who often report having to travel to more than one supermarket to complete a shopping trip owing to the limited range of foods in their local stores. The problem is noticeably worse for people living in rural communities, so it is not solely about price; access is also a factor. If one cannot travel to a range of supermarkets for shopping, the lack of a bus service may impact on health.

In the past three years, Coeliac UK has undertaken research into cost comparisons between gluten-free and gluten-containing foods on the high street. On average, gluten-free foods have been found to cost three to four times more than their gluten-containing equivalents. Some foods, such as gluten-free pitta bread, cost seven times more. Again, I refer the Minister to the Tesco bread comparison, to which we will keep coming back. For the average shopper, that can mean a difference of approximately £400 a year for staple foods such as bread, flour and pasta alone. Evidence suggests that people on lower incomes, or families with multiple members with coeliac disease, already struggle to maintain a gluten-free diet and that without access to gluten-free prescriptions their long-term health could be put at real risk.

I understand that there is a number of reasons for the higher cost of specialist gluten-free foods; they include the expense of buying alternative grains to replace wheat, product development, nutritional composition by fortifying with other items such as calcium and the considerable need for food science. However, that does not change the impact on the individual. It is therefore vital that gluten-free foods remain on prescription, as they have done for the past 40 years.

The Advisory Committee on Borderline Substances approves a number of products, such as foods and supplements, that can be available to patients on prescription. When a manufacturer applies to have its product available on prescription, it needs to have it approved by the ACBS. The ACBS will look at the type of product, its nutritional value, cost, and even its wrapping and the words written on the wrapping. The cost covers the cost of the product, plus postage and packaging. That cost should be the total cost to get it from the factory to the pharmacy. Slightly fewer than 200 products are currently approved by the ACBS for people with coeliac disease. They include a range of staple products, as outlined earlier, some ethnic foods and products such as biscuits, if they are necessary for an elderly person’s diet or someone who needs a high sugar intake.

Following an internal review earlier this year, the ACBS has agreed that in future it will consider only products that are considered to be dietary staples, including plain breakfast cereals, breads and rolls, crackers and crispbreads, flours and bread mixes, pastry mixes, pasta, pizza bases and xanthan gum. That list will become a very firm base to be adhered to. It is, however, worth spending a moment or two on the supply chain for these prescriptions, because that is where I will bring the Minister back to the cost implications that I spoke about earlier.

The supply chain is made up of a web of individual contractual agreements between manufacturers, wholesalers and other distributors and pharmacists. Those individual contracts are not regulated by the NHS. The end price to the NHS is agreed with the manufacturer by the ACBS, and that is the so-called drug tariff price. The end price should include any related transport costs—a point reinforced by the ACBS earlier this year. The costs associated with gluten-free prescriptions hit the NHS when the pharmacist reclaims them, and there are two potential components: the drug tariff price agreed by the ACBS and what are called out-of-pocket expenses, which are very interesting.

The headline costs to the NHS of gluten-free products arise largely from the impact of those out-of-pocket expenses claimed by pharmacists as a result of additional charges invoked by wholesalers and distributors for what is called non-standard supply. For example, the product might not be stocked as a standard item by the wholesalers, it might require ordering from an intermediary, or it might be treated as special because it has a short shelf-life, such as a fresh product has. Those additional costs remain relatively uncontrolled, however, because there is no specific agreement on how much may be charged by the wholesaler. The pharmacists will need to reclaim those out-of-pocket expenses if they are not to be disadvantaged.

The application of such costs varies considerably and depends on the individual contracts up and down the supply chain. It might be difficult for a manufacturer to control the addition of such costs further down the supply chain, just as it might be difficult for pharmacists to control such costs when they are tied to a particular wholesaler. Such practices may be seen in relation to other products supplied to the NHS, and might be increasing as the NHS strikes harder bargains on the supply of high-value contracts for more common treatments. The impact of such practices is not currently understood, so it would be useful if the Minister today commits to a robust assessment of the real costs to the NHS of additional charges associated with the supply of products—not only gluten-free ones—and to instructing relevant bodies to enter negotiations with the supply chain to explore the possibility of reducing costs overall. That might even involve looking at the drug tariff price.

We all recognise the financial constraints currently faced by PCTs and health boards throughout the UK, but responding to those constraints by eliminating access to gluten-free foods is potentially damaging to overall patient health, while there are more proven effective ways of managing the costs of gluten-free prescribing. The NHS should not be subject to excessive charging, but nor should patients be left unnecessarily paying the price of additional costs; instead, we need to be smarter.

We can be smarter by using local enhanced service contracts. Pharmacy-led prescribing schemes allow gluten-free foods to be supplied directly from community pharmacies, thus bypassing the GP. They allow commissioners to standardise prescribing habits, which would address NHS concerns about excessive and off-tariff prescribing. Furthermore, they might help to tackle handling charges by placing limits on what charges may be reclaimed by pharmacists without compromising patient satisfaction.

Looking for ways to streamline the system is not new. In 2001, the Cabinet Office regulatory impact unit published a report on reducing GP paperwork. It recommended that GPs should no longer need to issue prescriptions for gluten-free foods; instead, patients with coeliac disease should be able to obtain supplies from a pharmacy. The proposal was supported by the Royal College of General Practitioners, Coeliac UK and the Pharmaceutical Services Negotiating Committee. The National Pharmacy Association has developed a toolkit for NHS commissioners outlining the business case for an alternative supply route for gluten-free foods on prescription. That is due to be launched this month and is supported by the Primary Care Society for Gastroenterology and the Dispensing Doctors’ Association. The toolkit is being promoted to all PCTs, health boards and GP commissioning groups, which are urged to implement the pharmacy-led schemes as soon as possible—but why?

The potential benefits of a pharmacy-led prescribing scheme are many and include: improved dietary compliance and health outcomes, as good dietary adherence is aided by the ease with which patients can obtain appropriate amounts of gluten-free products on prescription; and a reduction in the annual cost per patient for the supply of gluten-free foods. According to surveys of costs from Northamptonshire and Cumbria, savings of between 20% and 40% are possible in the ingredient cost of gluten-free foods. Members might be interested to note that the annual ingredient cost in England for the provision of ACBS-approved gluten-free foods in 2010 was approximately £28.6 million, yet gluten-free foods comprised only 0.32% of the total net ingredient costs of all prescribed products. However, the introduction of a pharmacy-led scheme in England for gluten-free products alone would be expected to produce savings of between £5 million and £11 million in the first year.

Another benefit would be the release of clinical time. In 2002, the Royal College of General Practitioners estimated that the initiative, had it been implemented at that time, would have saved 209,000 appointments or more than 20,000 GP hours of clinical time. In a survey undertaken by Coeliac UK, GPs have confirmed that a change to pharmacy supply eases demands on their time. Also, overprescribing could be prevented by application of national guidelines, as all pharmacy-led schemes are based on the 2004 prescribing guidelines. By following a set monthly allowance, it is possible to prevent individual or nutritionally unsuitable prescribing—that benefit was identified in the roll-out of the Cumbria PCT pilot scheme.

Better cost control could be another benefit, as the pharmacy-led schemes provide better individual patient cost control because the pharmacy supply schemes are based on a system of units of gluten-free foods linked to the patient’s dietary needs, rather than on patient-led prescribing by GPs using form FP10. There is a need for better cost control as more people with coeliac disease are diagnosed, in accordance with NICE recommendations. More diagnosis will itself bring a subsequent risk to GP prescribing costs and time, both of which could be better managed in pharmacy-led prescribing.

A pharmacy-led scheme would also be in line with the 2008 White Paper, “Pharmacy in England: Building on strengths—delivering the future”, in that it would reduce the time-consuming administration of repeat prescriptions in GP surgeries; contribute to the range of clinical services offered by pharmacies, in particular to those with a long-term condition; expand patients’ access to treatment, making better use of pharmacists’ skills; and improve the patient experience, giving more rapid access to gluten-free foods by eliminating the need for GP signature of repeat prescriptions, and allowing more flexibility as products are launched or removed from the market.

Feedback from GP, pharmacy and patient stakeholders in Cumbria and Northamptonshire has been overwhelmingly positive. Cumbria, a county I know well, having lived there as a child, has been at the forefront of GP commissioning and, as such, has been able to assess pharmacy-led prescribing from two different perspectives: that of a GP in a clinical practice and that of a commissioning GP with budgetary responsibility. Dr Fayyaz Chaudhri, a GP in Maryport, said:

“I have been involved with this scheme in Cumbria for a number of years and have first-hand experience of the benefits to both patient and GP. There is a real issue to address in ensuring the supply of gluten-free foods. It is cost-effective for NHS, patient and taxpayer, and I believe that this toolkit needs to be rolled out across the country.”

To sum up on prescriptions, I would like the Minister to take note of the price of the Tesco bread I referred to earlier—he wrote it down, I think. Many people cannot afford to pay 800% more for a loaf of bread, more than 100% more for spaghetti, or five times as much for a bag of flour. Prescriptions are important to maintain the health of coeliac sufferers. Evidence from Coeliac UK already suggests that those disadvantaged by such costs will find maintaining a gluten-free diet a real challenge and their heath might suffer in consequence. Experts in gastroenterology have confirmed that access to gluten-free food is an essential part of the treatment for sufferers of coeliac disease. I urge the Minister to look at smarter ways of achieving it and I condemn rash reactions such as withdrawing prescribing, as we have seen in some places.

Le me say a word or two about eating out, to reinforce what I touched on earlier. I know that it is not the Minister’s direct responsibility, but he will no doubt feed it back to the appropriate Minister—though he looks puzzled. Currently, eating out is a lottery for people with coeliac disease. The gluten-free diet is not well provided for in the catering industry and dealing with the issue would have significant impact on the quality of life of people with coeliac disease. Although the industry is responding to some degree to the needs of people on a gluten-free diet, provision is not uniform.

Those who eat out often have to draw attention to themselves, asking to see the chef or the list of the ingredients that make up the meal. Often, they are faced with a member of the front-of-house team who has no idea what they are talking about, or they are passed to the chef, who might have a better understanding of their diet, but not necessarily. Catering for a gluten-free diet is not uniformly included in training for chefs and front-of-house staff, and including such training would better equip staff as they move forward in their careers.

Many people with the condition feel that eating establishments lack knowledge and understanding when it comes to offering safe, gluten-free food, so they stay in, keeping their health and money safe at home. We have not discussed cross-contamination, but it is a serious concern, and the nature of the catering industry, with its high staff turnover, can make trusting others with one’s diet difficult. As I said, many people therefore take the easy way out and stay at home.

People with coeliac disease represent 1% of the population, or 600,000 people, but the loss to the catering industry is greater, because coeliacs drive the venue decisions of the people they eat with. Research among more than 3,000 people with coeliac disease found that those who eat out do so with a minimum of two to three other people. With an average spend of between £10 and £20 per head, each coeliac meal is technically worth £60.

As I said, however, fears about finding safe, gluten-free options keep thousands of people at home. Some 62% of people suffering from coeliac disease eat out once a month or less, while only 38% eat out once every two weeks or more. When people were asked how often they would eat out if more safe, gluten-free options were available, the figures nearly reverse, with 74% saying they would eat out once or more every two weeks, and only 26% saying they would eat out once a month or less.

In these difficult times for the UK economy, harnessing that untapped market has obvious potential financial benefits for the catering sector. More than 40 pubs and restaurants nationally close every week, and coeliacs represent a huge market, which the hospitality sector cannot afford to miss. People with coeliac disease want to eat out more often, and they would be ready and willing to spend their money, if only they felt confident about gluten-free provision. The catering industry needs to help, and with new EU regulations coming into force next year requiring a reduction to 20 parts per million of gluten for food to qualify as gluten free, it needs to do more to convince coeliacs that it is aware of the law and working within it.

Being elected to this place in 2005 was a challenge to me in more ways than one, given that I was diagnosed with osteoporosis during the election campaign and that I came down here not knowing whether I would be able to eat between Monday and Thursday because of my coeliac disease. However, as a result of contact with Coeliac UK, and with the help of others, such as Lord Bilston and my hon. Friend the Member for North Durham, it was possible to constitute the all-party group. That was done not only to help coeliacs in Parliament, but to allow parliamentarians to use their personal experiences of, or interest in coeliac disease to help to raise the issue directly with the Government, and I am happy that we have been able to do that further today.

I am glad to see both my hon. Friends in their places, and I am sure my hon. Friend the Member for North Durham will not mind me outing him as a fellow diagnosed coeliac. However, there is a serious point here. As I said, one in 100 people in the UK suffer from coeliac disease, but about 500,000 of them have yet to be diagnosed. While some of us in the Room share the unenviable label of being among the few MPs to have been diagnosed with coeliac disease, there is a good chance that other Members also have it—they just have not heard the good news yet.

We last debated issues related to coeliac disease in February 2007, so today’s debate is long overdue. I am grateful to have this opportunity to lay my thoughts and hopes before the Minister, and I look forward to hearing his comments in a minute.

[Dame Anne Begg]

Before my hon. Friend finishes, I should pay tribute to the work that he has done to make sure that the catering outlets in the House of Commons offer a gluten-free alternative on every menu. That has made life a lot easier for those of us who are trying to follow a gluten-free diet. More restaurants are following that example, but he is right that eating out, which is often part and parcel of an MP’s job, is difficult. However, the House authorities should be congratulated.

[Gordon Banks]

They should, and I thank my hon. Friend for her comments. We are just waiting for one of us to be elevated to the House of Lords, because there are some difficulties over there.

I might be pushing my luck, but I would like to invite the Minister and his officials to come to a future meeting of the all-party group to talk a little more about what the Government are doing and to hear first hand from non-parliamentary coeliacs, because many of the issues that were relevant to the February 2007 debate are still relevant four years later.

I have talked about the challenges created by eating out. Research from Coeliac UK has shown that almost seven out of 10 people with coeliac disease prefer to eat at home, rather than to go out for a meal. I happen to be making one of my irregular sorties to a restaurant on Friday night, so I hope that the staff at Aldo’s in Alloa can cope with me. However, this is not just a social problem. Members of the all-party group will be aware of cases that have been brought to us in which sufferers of coeliac disease have been prevented from joining the police or the Army because of their condition.

Sufferers are looking not for sympathy, but for action, understanding and knowledge. Too often, that knowledge is missing, even among the professionals. I therefore return to some of the points I made earlier. We need to ensure that there is much wider knowledge and understanding of coeliac disease among the public and, perhaps more importantly, among the medical and catering communities. We need that knowledge not only among catering or hospitality staff in local restaurants or hotels; staff in hospitals need a greater understanding of the illness, too.

Let me give an example. A friend of mine who is a social worker told me about an elderly woman from his care home who had been hospitalised. Despite staff from the care home advising the hospital of her need for a gluten-free diet and of her coeliac condition, her social worker walked into the hospital one day and found her sitting up in bed eating toast. If we cannot get this right in hospitals, what chance do we have in the wider community?

We have talked about the economic impact on the hospitality sector, but there is a wider economic issue. For example, children who are off school unnecessarily may face educational challenges that impact on not only their schooling but their employability in later life. Similarly, having part of the work force stuck in the toilet rather than sitting at their desks is clearly something that the country needs to avoid. We all know that a healthier country is a more productive country. Indeed, figures obtained by Coeliac UK show that pre-diagnosis coeliac sufferers took an average of 21 sick days off per year, whereas those who had been diagnosed took an average of only three days off per year.

Work carried out by Coeliac UK suggests that the average age for diagnosis is 41, and the average time taken for diagnosis is 13 years. A great deal of work is therefore required to reduce those unnecessary years of suffering and the worry that accompanies them. There are a number of key messages I want the Minister to take away from the debate—I am sure he already knows them, but I would like to reinforce them. First, early diagnosis is vital. The later the diagnosis, the worse the condition and the worse the implications for other conditions that are likely to be inherited as a result of coeliac disease. Secondly, better management of the condition is possible and will save money.

I have moaned a lot this afternoon about the many problems facing those suffering with coeliac disease, and it would be wrong of me to create the impression that improvements have not been made. Indeed, my hon. Friends have mentioned some of them. Just to take Parliament as an example, the cafeteria was a risk too far for me when I came here in 2005, and my hon. Friend the Member for Aberdeen South alluded to that. Now we have better labelling and greater understanding among the staff, so it is much easier to eat in Parliament, and the staff deserve a big thank you for that. As my hon. Friend mentioned, however, that progress needs to be replicated in work canteens, restaurants, bars and shops across the UK. The products have also got better, even though that is reflected in their cost. It is important to accept that the food must be edible, not repulsive, as it was a number of years ago.

Before I wind up, I want to return to the issue of awareness and to say a few thanks. I never thought I would say this in my parliamentary career, but I would like first to thank the world’s No. 1 tennis player, Novak Djokovic, who has been following a gluten-free diet for the past year. That coincides with his rise to the top of the world rankings. It is difficult for me to admit this, but he may serve as a better ambassador for the health benefits of a gluten-free diet than me or any of my hon. Friends here today.

I also thank Phil Vickery, the well known chef, who has focused on gluten-free food and how it can be accommodated in the catering industry, and who is a Coeliac UK food ambassador, and Dr Chris Steele, the well known TV doctor, and another coeliac ambassador, who was fairly recently diagnosed with the condition. The biggest thanks must go to Coeliac UK, where Sarah Sleet and her staff, including Jo Archer, are committed to tackling all the matters that I have raised in a determined and professional way. They represent coeliac sufferers splendidly, and long may they continue to do so.

To sum up, coeliacs want and need better awareness of their condition among the medical profession, an informed approach from the catering and hospitality industry, and an understanding from the Minister that prescriptions are vital but that we may be able to do things better.

--- 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.

[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.