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Coeliac Disease

Volume 457: debated on Wednesday 21 February 2007

Motion made, and Question proposed, That this House do now adjourn.—[Tony Cunningham.]

Order. Will Members who are leaving the Chamber please do so quickly and quietly, so that we can get on with the Adjournment debate?

Thank you, Mr. Deputy Speaker, for allowing me the opportunity to have this debate on an issue that has knowingly affected my life for the past seven or eight years, and unknowingly has affected my whole life. I should also like to thank my right hon. Friend the Minister for being in her place to reply.

Coeliac disease is not simply a food allergy, and sufferers are not just fussy eaters. It is an auto-immune disease caused by gluten intolerance that can cause severe symptoms. Gluten is a protein found in wheat, barley and rye. The gluten component damages the gut, preventing normal digestion and absorption of food and therefore vital minerals and nutrients. If it is left undiagnosed, it can lead to life-threatening illnesses such as bowel cancer, as well as other serious conditions, including osteoporosis and infertility.

Unfortunately, sufferers are born with the condition due to genetic disposition, and symptoms can be triggered at any time. For me, that happened when I was 44; I know that many hon. and right hon. Members will struggle to believe that I have exceeded 44 years of age as they look at me tonight. Coeliac disease can be treated effectively and simply by changing to a gluten-free diet, however, but in society there still appears to be a lack of knowledge regarding the disease. That applies to the general public, and more worryingly, to health care professionals, as well as to politicians. On asking anyone who has been diagnosed late in life, as I was, one will hear a catalogue of medical errors and misdiagnosis. Some of these stories would make people’s hair curl; mine was made to fall out.

I look back and I clearly see symptoms that were being wrongly diagnosed. Alarmingly, diagnosis rates are very low. Seven out of every eight people who have the illness are unaware of it. Symptoms vary, ranging from bloating, diarrhoea, nausea, weight loss and depression to hair loss, which I mentioned. It is those varying symptoms that obviously add to the confusion in the diagnostic process, as coeliac disease is not high on the radar of either GPs or specialists. I want to focus on better diagnosis in my speech tonight. There is a great need to have a better system of diagnosis to ensure that sufferers can have a better quality of life. Early diagnosis is the key. Kids cannot give of their best if they are ill; they cannot work in the classroom if they are stuck in the toilets. That is not good enough for our children, and it is certainly not good enough for the future of the UK.

A 2006 survey carried out by Coeliac UK discovered that the average age for diagnosis is 41.3 years and that the average duration of symptoms prior to diagnosis is 13.1 years. I am sure that hon. Members would agree that more needs to be done to remove those 13 years of suffering and the worry that accompanies them.

I can add a personal account on this matter. It took me about 10 years of going back and forth to my doctor to be diagnosed. I have apparently had stomach ulcers and irritable bowel syndrome, and I was also told that my problems could be related to stomach cancer. That is a set of conditions that even a hypochondriac could not have dreamt up. However, as hon. Members may have guessed, they were clearly the result of misdiagnosis. That is a prime example of where GPs and specialists have been unable to recognise the symptoms placed in front of them. I am not saying that that applies to all medical practitioners. Funnily enough, when I visited a particular specialist for the first time after yet another referral from my GP, he thought that I had coeliac disease after I had spoken to him for two minutes. There is knowledge about the disease, but it must be spread much more widely in the medical community.

There is still a responsibility on society as a whole to recognise the symptoms, however, and it is our job to raise awareness and promote the facilities that can diagnose the disease. For example, the Biocard test that is made by Adastra Medical, which will be available over the counter at Boots the Chemist in May, is a quick and relatively cheap way of testing for coeliac disease. That pin-prick test, which has a 97 per cent. accuracy rate, could save the NHS future costs in treatment of infertility, osteoporosis and cancer. Let us be clear: some of the solutions are not too difficult, but the rewards are great.

As well as the obvious health implications, coeliac sufferers must overcome other barriers that can arise in society. In recent discussions with coeliac sufferers, we have learned of the difficulties that many have faced in being accepted into the armed forces and the police. Written answers to my questions in the House have not necessarily shed any light on that. However, I was pleased to have had a discussion with the Minister with responsibility for disabled people—the Under-Secretary of State for Work and Pensions, my hon. Friend the Member for Stirling (Mrs. McGuire)—and with Sarah Sleet from Coeliac UK regarding the implications that disability discrimination legislation may have in that respect.

Coeliac disease also has implications for our economy. Those who took part in the 2006 survey highlighted an average of 21.4 days off work prior to diagnosis. Post-diagnosis, that fell to an average of 3.6 days per year, so there are clearly economic advantages to be gained from early diagnosis.

Some progress has been made but there is still a long way to go. Hon. Members may have noticed that in Westminster we have a good standard of menu labelling, but, believe it or not, there is life outside the Westminster bubble.

I commend the hon. Gentleman for bringing this matter to the attention of the House. In relation particularly to people who are less favoured than we are, is he disturbed to know that in my home county of Northamptonshire, the primary care trust has severely attenuated the range of foods that are available on prescription to coeliacs, so that people on income support are faced with the invidious choice of begging from their family or restricting themselves to a highly unattractive, basic and rarely adequate range of products that they can consume?

The hon. Gentleman makes a valuable point that I shall come to later.

Going back to the Westminster bubble, the progress that has been made here since May 2005 needs to extend further out into the wider community—into bars, restaurants and shops nationally. Trips to the supermarket can take hours when it is necessary to study the packages of almost everything that one buys. New European directives that came into force in November 2005 make it mandatory for all food ingredients to be listed on packaged food, but we can go further to ensure that the advice is clearly labelled, not merely in very small print on the back of the package.

In October 2005, the all-party parliamentary group on coeliac disease and dermatitis herpetiformis was formed with the help of my hon. Friend the Member for North Durham (Mr. Jones), the hon. Member for Daventry (Mr. Boswell) and Lords Bilston and Brookman. The group brings together Members who have an understanding of the condition and want to be involved in the work on it. Last May, I tabled early-day motion 2127 to raise awareness of it. It received 144 signatures, thus highlighting that it was an issue that MPs were concerned about, even if few had a real understanding of it.

Moving on to the point made by the hon. Member for Daventry, this Session I have tabled early-day motion 276, which currently has attracted 124 signatures. I take this opportunity to urge other hon. Members to add their names to it. Members of the all-party group and coeliac sufferers are worried that certain primary care trusts are restricting the supply via prescription of gluten-free foods. Those actions appear to be cost-driven, not care-driven, and they have no place in a modern and progressive NHS. We recognise that many gluten-free foods and ingredients are significantly more expensive than regular foodstuffs. For example, gluten-free flour is about five times more expensive than regular flour. With a gluten-free loaf of bread costing about £2, even a Member who never does the weekly shop will appreciate that that is very expensive for a loaf of bread. However, those goods are not free on prescription for coeliac sufferers unless they are exempt from prescription charges for other reasons. I, and around 91 per cent. of Coeliac UK members, find prescriptions essential for our dietary management. Primary care trusts should not pass on the cost to other patients, certainly not those who cannot afford it.

The goods need to be prescribed by a GP who understands the volume of products required, to ensure that people with busy lives are not expected to treat their GP’s surgery as a grocer’s store and thus add to the GP’s pressures.

As I said, coeliac disease also has a cultural and social dimension. In the 2006 survey, 67 per cent. of respondents said that they were less likely to eat a meal outside their homes since diagnosis. That figure would be greatly reduced through better labelling on foodstuffs and menus. For too many, eating out is a minefield, but better diagnosis and information can act as a minesweeper, ensuring that people live the life that they want and not the life that they feel that their illness allows.

Coeliac disease is a health issue, but people also need to be educated better about it. As politicians, we must help to raise awareness, and that has been done to some extent in recent years. Some of that progress can be attributed to the excellent work and dedication of Sarah Sleet and the team at Coeliac UK. I hope that our all-party group, and a similar organisation in the Scottish Parliament, can work with Coeliac UK to add to that awareness.

Last week, a hugely productive debate took place in the Scottish Parliament, to which I was pleased to see that so many Members contributed. The Coeliac UK information stand was pleased to welcome prominent politicians such as Scotland’s First Minister, Jack McConnell, Minister for Health and Community Care, Andy Kerr and Presiding Officer, George Reid. It was interesting to hear the personal accounts of MSPs and that of Yvonne Murray, with whom hon. Members who follow athletics may be familiar.

Yvonne spoke about her daughter, who is a coeliac sufferer and weighed only 20 lb when she was three years old. She related other distressing tales about her daughter—things that no one would wish on any child. Yvonne’s background highlights that she is clearly a determined individual, but we cannot expect everyone to be that determined. After all, not many people have the courage to stand up to their doctor to say that the doctor’s diagnosis of their child’s condition is wrong.

Awareness and ease of testing alleviates speculation and misery, avoids hearsay and provides a quick answer. Unfortunately, serious consequences are sometimes associated with coeliac disease. For example, an elderly woman sadly passed away after developing bowel cancer as a result of misdiagnosed coeliac disease. In Scotland, in a neighbouring constituency to mine, another elderly woman was admitted to hospital from a care home. Despite informing the hospital of her coeliac condition, people from the home found her on two consecutive nights sitting in bed eating toast. I hope that those examples give the Department of Health an impetus to examine the issues more closely. I also ask that, when possible, representatives of the Department consult the all-party group, and Coeliac UK at our forthcomming functions.

As someone who has personal experience because my wife suffers from coeliac disease, I welcome this historic debate—I understand that it is the first on the subject in the House. I reinforce every one of my hon. Friend’s observations about the long-term suffering, the various treatments, the acute abdominal pain, the anaemia and the dietary deficiencies. Yet the condition could be so easily identified if only there was awareness in the medical profession and the ability to diagnose it more quickly, without sufferers having to go to Boots. I am sure that my hon. Friend will join me in encouraging the Minister to roll out the diagnostic device that he mentioned to GPs rather than forcing people to go to Boots.

My hon. Friend is right. Diagnosis is the be all and end all. 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. I hope that the Minister will take away some information about the Adastra test and come back to us another time to tell us her view of its suitability in the NHS.

Returning to my point about the Department of Health and Ministers working closely with Coeliac UK and, indeed, the all-party group, we have a reception in the Terrace pavilion on 15 May this year as part of coeliac awareness week. I would like to take this opportunity personally to extend an invitation to the Minister to come along and make a valuable contribution to that day—and she can even bring her Parliamentary Private Secretary along.

As I mentioned earlier, Coeliac UK is a prime leader and it continues to fund research projects into the disease. It is currently investing about £760,000 in projects based at Imperial college, London, Southampton university and City hospital in Birmingham. It is my hope that that work and this debate will help raise awareness and also help to provide the impetus to help my right hon. Friend and her colleagues in the Department of Health to look at the issues raised and deliver solutions that will benefit the large number of coeliac sufferers.

I am grateful to my hon. Friend for giving way. Speaking as someone with a family member who suffers from coeliac disease, I am very aware of the issues that have been raised this evening. Before my hon. Friend finishes, will he expand on how we can perhaps extend awareness further? Clearly, the diagnosis time of about 13.6 years is too long, especially when we know that early diagnosis makes a significant difference. We have heard about coeliac awareness week—and how the Minister would be welcome to come along to the reception—but how much further work could the Department do to ensure that every GP is made aware of this disease and has the diagnostic tools available so that early diagnosis can take place and reduce the length of the suffering?

I have no doubt that the diagnostic tools are there. I have been diagnosed and people are being diagnosed. What is important is GPs’ awareness of the need to look further into the symptoms. Sometimes the symptoms are complex and at other times they are very simple, but they need to be examined. As I said earlier, the disease needs to be on the radar. When I went back to my GP after being diagnosed, he went, “Oh, Gordon, coeliac disease. You know I never gave that a second thought. That is two of them I have missed this month.” To me, that is not a level of care that coeliac sufferers should have to experience. It is all about raising awareness. The tools are there; it is really about getting them on the GPs’ radar.

I hope that my contribution this evening has highlighted the cost of poor diagnosis. I hope that we can take steps to eradicate the suffering—sometimes deaths—due to coeliac disease. I am glad that the House has listened to my remarks and I am grateful to other hon. Members for their interventions. I will draw my remarks to a close to allow contributions from other parts of the House and I look forward to hearing what the Minister has to say later.

I start by congratulating my hon. Friend on securing this debate and I declare my interest as the chair of the all-party coeliac disease and dermatitis herpetiformis group. I also declare an interest in being a coeliac sufferer myself. I was diagnosed only five years ago, like my hon. Friend, and after major stomach surgery. I have to say that a gluten-free diet has changed my life, as it did my hon. Friend’s, particularly in regard to the symptoms that I previously had. I also stress that a gluten-free diet is not a lifestyle choice or some new Hollywood-type fad diet, but something that we coeliac sufferers need strictly to abide by. My symptoms included tiredness, depression and abdominal pain, but there is also real concern when you do not know what is wrong with you—and the stress that that can cause an individual should not be underestimated.

I am pleased that awareness is being raised, albeit slowly, and I give credit to the House authorities, which co-operated very closely with the all-party group to have food properly labelled in this place. I would also like to congratulate certain supermarkets, such as Sainsbury’s, which is very good with food labelling, as well as providing gluten-free alternatives. Even the airline industry has slowly come round to the fact that coeliac sufferers exist, although I always find it strange that when I have a gluten-free meal on British Airways, the air stewardess offers me bread with it. The one thing that I miss is a pint of beer, which I have not been able to enjoy now for about five years, though my hon. Friend tells me that there are some very good alternatives to it.

I finish by saying this. The hon. Member for Daventry (Mr. Boswell) referred earlier to prescription, which is vital. This is a crippling disease for the sufferers, and let us not forget the parents of children who suffer from coeliac disease. Those on a limited income cannot afford the expensive alternatives to bread and other foods. Those foods are not luxuries; they are the staples that most people take for granted and buy every day in the supermarkets.

I am pleased that this debate has taken place today. Let us hope that it adds a little more to people’s understanding of coeliac disease, which is more common than we like to think.

I congratulate my hon. Friend the Member for Ochil and South Perthshire (Gordon Banks) on securing this debate. I have to say that this is one of the best attended end-of-sitting debates that I have responded to. I am also pleased to have heard the contributions of the hon. Member for Daventry (Mr. Boswell) and from my hon. Friends the Members for Pudsey (Mr. Truswell), for North Durham (Mr. Jones) and for Loughborough (Mr. Reed). They have demonstrated the extent of the concern that exists in the House about this matter, and also the success of the all-party group, which is vital for raising public awareness of the issues that affect those who live with coeliac disease.

It would be nice to have another hour to debate the points that have been made in all those contributions, but I will try to address as many of them as possible in the remaining time. It is good news that this matter is also being debated in the Scottish Parliament, and that the devolved Administrations are looking at the issue. I would like to pay tribute to Coeliac UK, and particularly to Sarah Sleet. They play such an important role in improving the lives of people with coeliac disease through support, campaigning and research at national level and, importantly, at local level. I might say more about that when I go on to talk about prescribing.

My hon. Friend the Member for Ochil and South Perthshire graphically and movingly described the problems that people face if they are not diagnosed early. It is vital that GPs should be able to recognise the early symptoms of the condition, although we need to face the fact that it can sometimes be difficult to recognise it, as its symptoms can be similar to those of other conditions. Raising the profile of coeliac disease with the medical profession, and particularly with GPs, is therefore vital, and the work that Coeliac UK and the all-party group are doing can help to achieve that.

That is also why the Department of Health set up Prodigy, an online, up-to-date and interactive decision support system. It is a source of clinical knowledge that can help health care professionals and patients to manage the common conditions generally seen in primary and first-contact care. The sections of Prodigy devoted to the diagnosis, treatment and management of coeliac disease expressly recommend Coeliac UK as a source of information and support.

The Primary Care Society for Gastroenterology last year revised and issued guidelines on the recognition, diagnosis and management of coeliac disease. They are designed to assist the NHS in achieving earlier diagnosis, and they include the latest information on the clinical features, diagnosis and management of the disease. My hon. Friend and others made a point about the Biocard testing kits. While we of course welcome any new tools that can help to get more people diagnosed, it must be recognised that self-testing kits should not replace a medical diagnosis, and that anyone experiencing symptoms of coeliac disease should seek the advice of their doctor. It is important to get that point across.

In relation to raising awareness among the general public, NHS Direct, NHS Direct Online and NHS Direct Interactive have been established to provide advice and information on health and self-care. We can therefore ensure that people have access to information on conditions and illnesses such as coeliac disease. I am glad that my hon. Friend the Member for Ochil and South Perthshire has had a meeting with my hon. Friend the Minister with responsibility for disabled people to examine ways in which awareness can be raised in different Departments.

The type of principles set out by the Department of Health in its national service framework on long-term conditions would apply to people with coeliac disease. I am aware, however, that medication is not always relevant to the condition, and that a gluten-free diet is often the answer.

Correct diet is essential to control of the condition and, as has been pointed out, such a diet can be much more expensive than an ordinary diet. Gluten-free products are now available on prescription to ensure that people with the disease can obtain staple foods. We fully expect GPs 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 needs. It is true that the survey conducted by Coeliac UK in 2002 found that more than 90 per cent. of people with the disease obtained some gluten-free food on prescription.

However, I appreciate the concerns raised by Members that changes to local prescribing policies mean that some PCTs may not be fully meeting the dietary needs of their patients. I know that the position in Northampton is being reviewed in April, and that Coeliac UK has done a lot of work with PCTs in others areas to highlight some of the problems. That has had an effect on local decisions. We certainly expect the provision of food items to be based on individual need, not on a preconceived idea of what someone ought to receive.

The Advisory Committee on Borderline Substances was set up in 1971 to advise GPs on the prescription of products such as foodstuffs. It has now become the NHS Purchasing and Supply Agency. Later in the year, a review will be carried out of the remit, membership and functioning of the body to make sure that it meets some of the NHS’s changing needs, and this area may be one of those considered.

With regard to food labelling and prescribing of foods, obviously, prescribed foods will represent a small proportion of an individual’s diet. As my hon. Friend the Member for Ochil and South Perthshire said, coeliac disease sufferers buy most of their food from high street shops, like everyone else. It is therefore important that food labelling be comprehensive and reliable. I think that it has got better in recent years.

Again, Coeliac UK provides quarterly updates on products, which is extremely helpful for sufferers. The Food Standards Agency has strengthened food labelling rules to help people to avoid certain ingredients, but I know that with coeliac disease, there can be issues around, for example, the production process if flour is used. That is important. I will talk to the Minister of State, Department of Health, my hon. Friend the Member for Don Valley (Caroline Flint), about some of the issues that have been raised with regard to labelling.

I thank my hon. Friend the Member for Ochil and South Perthshire for the invitation to the reception, which I certainly hope to attend. I hope to reflect the support that the Government give to the work of the all-party group and to Coeliac UK, and to help to continue to raise awareness of the issue in the House and outside.

The motion having been made after Seven o'clock, and the debate having continued for half an hour, Mr. Deputy Speaker adjourned the House without Question put, pursuant to the Standing Order.

Adjourned at fifteen minutes to Eight o'clock.