Coeliac Disease
The final item of business is a members' business debate on motion S2M-5385, in the name of Margo MacDonald, on awareness of coeliac disease. The debate will be concluded without any question being put.
Motion debated,
That the Parliament is concerned that the average general practitioner has little or no experience of coeliac disease, an extremely debilitating illness that affects one in 100 of the population, of which seven out of eight are undiagnosed; regrets that the lack of knowledge of this condition prevents many people with coeliac disease from receiving early diagnosis, leading to serious complications such as osteoporosis and bowel cancer if left undetected; welcomes the work done by Coeliac UK in providing literature, advice, a helpline and dietary information to address this need, and believes that the Scottish Executive should promote such measures as it sees fit to ensure that GPs in the Lothians and throughout Scotland receive more appropriate training and support to enable them to recognise and to diagnose the disease more accurately.
The percentage of the population that is calculated to have coeliac disease indicates that up to 50,000 Scots, or one in 100, could be sufferers. As only one in eight of that number is calculated to have been diagnosed, at any one time more than 40,000 of our fellow citizens are enduring bloating, diarrhoea and nausea. They might also experience weight loss and depression, for which their general practitioner might prescribe Prozac or something like that. Their quality of life is very much affected by coeliac disease, but they might not know it—more important, their GP might not know it.
Not all GPs would miss the symptoms of the disease, but too many do. That causes the sort of distress that Yvonne Murray described for us this morning at the awareness-raising breakfast that we held in committee room 3. Before I remind members of the dreadful experience that Yvonne's family had to endure before Laura, her daughter, was diagnosed, I thank them for their support this morning.
When Yvonne Murray first contacted us to raise her concern that we were not dealing properly with this very debilitating disease, I knew what she was talking about without too much briefing because one of my granddaughters has coeliac disease. We were lucky, in that our experience was not like Yvonne's. Josephine was diagnosed as a very young child. She has never known anything other than a gluten-free diet and the whole extended family understands the implications.
We were lucky, but Yvonne Murray was not. She has given me a copy of her speech, because I wanted to remind members of Yvonne's experience and to share it with members who were not in committee room 3 this morning. She said:
"When my daughter's symptoms first started back in 2003, it was put down to the fact that she was in nursery picking up everyday infections. The GP did mention at the time that my daughter could be gluten intolerant, but at no point did she offer to do a blood test for coeliac disease. During this time I was in and out of the GP practice every month with symptoms which included diarrhoea, vomiting and abdominal pains—my daughter was constantly sick.
As time went on she then developed mouth ulcers on top of everything else. It was at this point that our lives were turned upside down. Her weight started to drop at an alarming rate and she stopped growing. She would cry constantly because her tummy was sore and would crawl up on to the sofa and was so lethargic that she couldn't play with her friends—she didn't have the energy. She then stopped eating and drinking because the mouth ulcers had become so bad and was finally admitted to hospital, where I had to almost beg a Consultant to give her the coeliac blood test. During this time we tried desperately to get my daughter to eat as we had the threat of a gastric tube being inserted hanging over our heads."
Hearing that had a dramatic effect on the people who were at this morning's event. Those things happened, but they should not have done.
A number of basic needs of coeliac sufferers can be identified, a range of which other members want to speak about. I will deal with just two of them. A suitable standard diagnosis procedure that is known to potential patients and to parents with young children should be commonly practised by general practitioners or specialist nurses. We know that an inexpensive and highly effective blood test is produced by Adastra Medical. I do not wish to promote one company at the expense of others, but it demonstrated its product this morning and I believe that it has a 97 per cent accuracy rate. That product or products like it could be commended to GPs. It is perhaps even more important for GPs to be made aware of the fact that many of the people who present with the symptoms of coeliac disease will not be suffering from some other complaint and will certainly not be imagining their symptoms.
It might be possible to provide smart card access to suitable food products. Once again, my family was lucky—we were in a financial position to buy the gluten-free products that are available in the stores. The excellent booklet that is produced by Coeliac UK makes it possible to identify easily which supermarket products are gluten free.
Margo MacDonald's first point was about the availability of a simple test. Has she had any discussions with the minister about the possibility of having that test made available through local pharmacies, in the same way that the diabetes test is available?
The minister came along to this morning's event and he is interested in that area. Perhaps when he sums up he will outline some of the routes that the Executive might pursue. Today's events have helped to ensure that minds are open on the issue, which is the important thing.
In conversation with me earlier this evening, John Home Robertson said that it might be a good idea for people's blood to be tested for a wide range of conditions, including coeliac disease, when they first donate blood. That is a straightforward and sensible idea. I know that it is unusual for John Home Robertson to have such an idea, but I should give him credit for it.
You have one minute left.
As I have only a minute left, I will not go into my smart card idea, but I have discussed it with other people and the minister knows that I have put it on the table. It fits perfectly with the prevention and self-management regime for the national health service that was announced earlier this afternoon.
The situation of the many people who suffer from coeliac disease can be improved. I hope that today's activities and the work that has been put into them by Coeliac UK, Yvonne Murray and members of the campaign groups from all over Scotland—some of whom are in the public gallery—along with the interest that has been shown by ministers, the First Minister and other MSPs and the effort that has been made by Peter Warren from my office, will raise awareness of the disease, improve the NHS service to sufferers and allow them to have the much better quality of life that follows from an early diagnosis, access to gluten-free foods and participation in groups such as those that I have met in the Parliament today, as well as the Long-Term Conditions Alliance Scotland. My motion is reasonable and just and I ask members to support it.
We move to the open debate. I ask members to keep their remarks to four minutes, as that will allow me to fit everyone in.
I congratulate Margo MacDonald not only on bringing the motion before the Parliament, but on this morning's substantive presentation. I also commend Yvonne Murray's very moving speech, from which Margo MacDonald quoted, about her experience with her daughter—an experience that came as a huge shock to me. I say to Margo MacDonald that this is one of the debates that will produce ministerial results. Some of the solutions are not too difficult.
I thank Coeliac UK for the substantive briefing that it gave to members, the key point of which was that, if people think that someone who is a coeliac sufferer simply has a food allergy, they underestimate and understate the situation. Of course, we are talking about an auto-immune disease that has severe short-term and long-term repercussions.
I understand that as many as 50,000 Scots could have the disease, but that only one in eight may be diagnosed. That is because of the difficulties in diagnosing the symptoms, but also because of lack of knowledge in the medical profession. Again, that point was highlighted by the presentations that we heard from Yvonne Murray and Gordon Banks MP, the latter of whom was diagnosed late in life.
I want to focus on the price of gluten-free products. Gordon Banks made the point this morning that, even when someone is buying foods that are not marked as gluten free, they have to take a long time to read through the list of ingredients to ensure that the offending ingredients are not included. It is good that Tesco and Sainsbury's now have gluten-free areas—we have all seen them—but we need to look at the prices. I will compare some foodstuffs: if bread is normally 35p, the gluten-free price is £1.78; if plain white flour is 29p, the gluten-free price is £1.43; and if a packet of penne pasta is 37p, the gluten-free price is £1.48.
As I listened to Yvonne Murray's speech this morning, two things came to mind. First, I was struck by the way in which this able, informed and determined woman managed to secure a resolution for her child, through pursuing the issues, and by how she has moved on to helping others. What if someone is not that kind of person? What if they do not come from that kind of background? Perhaps they come from a deprived area, they are not the brightest of people, or they are not determined or informed. If so, they will not be the kind of person who can unlock this puzzle for their child. I wonder how many such people there are in our communities.
The second thing that came to mind was that, even if someone is diagnosed, how can they afford the price of gluten-free products? The coeliac sufferer or the parent of a coeliac cannot deviate from those products. I leave members with that thought. Perhaps some members should approach the supermarkets, which make great profits, and ask them how they can defend the price differences between products. We should ask the supermarkets to bear in mind the many people who are required to purchase gluten-free products.
I thank Margo MacDonald for bringing the debate to the chamber and congratulate her again.
First, I thank Margo MacDonald for lodging her very important motion, thereby enabling members to debate it in the chamber tonight.
Many of us received a letter from Gordon Banks, the MP for Ochil and South Perthshire, who is a colleague of mine and who has been pioneering awareness of the issue at Westminster. I hope that members do not mind if I read from his letter—he knows that I will do so. Obviously, as a sufferer of coeliac disease, he puts the points better than I would.
Gordon Banks says:
"I was diagnosed as suffering from Coeliac Disease a number of years ago, but as those who have been diagnosed will understand, this late diagnosis only highlights the fact the condition has been present possibly from birth. The longer the diagnosis takes, the more serious the implications can be in as much as this can lead to the development of Osteoporosis"—
which I gather he has—
"Bowel Cancer and other serious illnesses and conditions."
He goes on:
"When I was elected to Westminster in May 2005, I found the transition to this lifestyle challenging, largely due to the lack of signage indicating gluten content in foodstuffs served in Westminster. This prompted me to form an All Party Parliamentary Group on Coeliac Disease and Dermatitis Herpetiformis. I am happy to say that we are now in our second year and have had successes. Gluten free bread has been introduced to most, if not all, of the restaurants and menus in Westminster."
Perhaps we could do something on that front in the Scottish Parliament.
He continues:
"Most menu products are now clearly marked so that sufferers can clearly identify which foods are appropriate. I have tabled two Early Day Motions relating to the Coeliac condition. Last year I tabled EDM 2127, which was designed to raise awareness of Coeliac Disease. I am happy to say that this attracted 144 signatures on a cross party basis. Additionally, this year it has come to light that certain English Primary Care Trusts appear to be restricting the prescribing of gluten free foods."
I know that Margo MacDonald is well aware of that, because she mentioned it to me earlier.
Gordon Banks goes on to say that he has
"recently tabled EDM 276 highlighting this issue which has been supported by 86 members."
He asks for our support in tonight's debate, on behalf of all constituents who may be affected. We heard about the breakfast this morning—I am sorry that I was unable to be there, as it sounds as if it raised awareness even more.
The display outside the chamber, which Gordon Banks and staff from Coeliac UK have been holding all day, has also been very good for raising awareness among MSPs. Like Margo MacDonald, I welcome the people from Coeliac UK to the visitors gallery—I am sorry that I did not do that earlier.
It is important to think about ways forward. I hope that the minister will be able to take on board the issues that have been raised. A huge number of people—in the region of 50,000 in Scotland—is affected. However, only a small percentage—one in eight—has been diagnosed. There must be an easy way of addressing testing—Christine May mentioned the possibility of diagnosis in pharmacies and so on. I hope that the minister will be able to come forward with some ideas.
I thank Margo MacDonald for bringing such an important subject for debate. I also thank everyone from Coeliac UK, especially Yvonne Murray, whose story was absolutely horrific. The health service nowadays seems to take a long time to make diagnoses. I have a good friend of about 50—not a child, so she was able to speak for herself—who had to become seriously ill before she was diagnosed with coeliac disease. It took about three months of phone calls to me asking, "What do you think I should do? I'm in agony." I would say, "You've got to go to the hospital." When she got to the stage of lying on an operating table, about to have an endoscopy, her biopsy had been forgotten about, so she was thankful that she was compos mentis enough to be able to ask, "Aren't you doing my biopsy today?" After waiting about three months, she deserved to have a result. Unfortunately, she had to ask the surgeon, but he then carried out the biopsy and she was diagnosed with the disease.
I knew about coeliac disease—Nanette Milne will agree that it was part of a doctor's training—as we all did because it is in the differential diagnosis of many illnesses. As a paediatric resident, I examined children for coeliac disease, but a doctor needs to suspect that something is wrong before he or she can diagnose it. Doctors need to take the time to think about their diagnoses. What happens nowadays is that people are being processed. If doctors are focusing on targets, they are not focusing on people. They should not just be processing patients.
My other fear about the health service as it approaches change concerns continuity. Staff do shifts, people change over and patients do not always see the same general practitioner or consultant. Those points must be considered in respect of continuity of care and enabling early diagnosis.
Does Dr Turner agree that leaving it to GPs to pick up coeliac disease might not be adequate and that we might need a screening programme to pick it up more routinely?
I agree absolutely. It should not be left for GPs to diagnose coeliac disease. Nurses and whoever else comes into contact with the patient should also play a part but, eventually, we will come to the pharmacist. Cost will probably be at the back of the problem with diagnosis, but many conditions can be diagnosed by blood test. Coeliac disease is one such condition, as is diabetes. Coronary heart disease could also be tested for by blood test, which has been done.
We need to help our clinicians to have time to diagnose. People should not have to be able-bodied before they can fight for their rights. That applies in respect of many chronic conditions—our treating those conditions better would mean a wonderful saving for the health service and it would give back coeliac sufferers their lives. It would enable them to live proper and full lives without the worry of cancer or osteoporosis. Those conditions are preventable if coeliac disease is diagnosed, but it must be diagnosed early.
I add my congratulations to Margo MacDonald on securing the debate and to Coeliac UK on its tremendous efforts in preparing for this evening. The briefing pack that it gave us is extremely readable and informative. Although I had, as a doctor, some previous knowledge of the condition, I have significantly added to that knowledge today. I must also thank the society and Margo MacDonald for arranging such a delicious gluten-free breakfast. It is a long time since I saw such an array of exotic fruit so early in the day.
I first became really aware of the practicalities of coeliac disease about 20 years ago, when my late sister-in-law was put on a gluten-free diet. At that time, there was little awareness of the condition and gluten-free products had to be carefully searched out. I remember studying labels on tins and packets—sometimes in vain—for an indication that there was gluten in the contents, and puzzling over what I would give her to eat when she came for coffee or a meal. She was sometimes regarded as being a little bit of a food freak because there was scant understanding of her condition.
I do not often welcome European directives, but the ones that came into force in November 2005 that made it obligatory to list all ingredients of packaged food must be good news for people with coeliac disease, because that makes it easier for sufferers to be sure of what they are eating. However, it is a great pity that, as Christine Grahame pointed out, gluten-free foods are expensive.
To think that there are probably 43,000 people in Scotland today who have undiagnosed coeliac disease is quite frightening, considering the long-term health risks of osteoporosis, bowel cancer and infertility to which it can lead. I confess, rusty as my medical knowledge is, that I was not aware of those risks until today, but I sincerely doubt whether a high percentage of medical graduates know about them. There is clearly a need to inform people about that hidden threat to health and to educate GPs about it so that they learn to keep it in mind when treating patients who present with unexplained gastrointestinal symptoms, anaemia, weight loss and the many other symptoms that can be manifestations of this autoimmune system disease.
All of us who were at the breakfast meeting today were touched by Yvonne Murray's moving account of the time it took to achieve her daughter's diagnosis. Gordon Banks MP is typical of the many sufferers who are not diagnosed until middle life. Such well-known people are to be congratulated on going public with their stories and are to be admired for doing that. Personal experience is much more effective in spreading information than leaflets or other advertising materials.
I commend Coeliac UK for its continuing campaigns to raise awareness and encourage early diagnosis of coeliac disease, for its commitment to helping people who have the condition by providing support and information, and for backing research into new treatments and the possibility of a cure.
Coeliac UK's campaigns this year for better hospital food and better training for chefs, and its excellent efforts to raise awareness at Holyrood—it even managed to get the Minister for Health and Community Care to come to the breakfast meeting—demonstrate the worth of the charity and its members. I support the charity's efforts and the terms of Margo MacDonald's motion and I will help in any way that I can during coeliac awareness week from 14 to 20 May.
I also congratulate Margo MacDonald on securing the debate and I thank the people who were involved in this morning's reception and the display that has been set up outside the chamber.
If one in 100 people is affected by coeliac disease, as I am sure is the case, about 1,000 people in my home area, the Scottish Borders, and as many as 500 people in my constituency are affected. More than a dozen people contacted me before the debate to describe their experiences. One person, whom I met in the street the other week, said that after she was diagnosed and her diet was changed, she felt like a new woman.
I pay tribute to Evelyn Jackson, of Coeliac UK's Border counties voluntary support group, who is working hard in my part of the world to raise awareness of coeliac disease. During the debate on making the NHS locaI, which just took place, I mentioned Evelyn Jackson, who said that after she was diagnosed and changed her diet she felt as though she had been driving a car with the handbrake on for years. It is important that we do everything we can do to ensure that as few people as possible have to go through life with the handbrake jammed on.
Members have made constructive suggestions. I am sure that the minister will agree that information for GPs and other NHS professionals is important. There might well be ways of providing information through the normal channels as well as through the activity of local coeliac groups. I agree that blood tests at community pharmacies are an appropriate way forward. As John Home Robertson said, routine analysis of blood samples seems to be particularly important.
Coeliac disease can lead to other conditions, such as osteoporosis. I am not medically qualified, but I understand that because gluten damages the small intestines of people who suffer from the condition, nutrients are not absorbed as they should be, which leads in some cases to unfortunate consequences, such as osteoporosis—which is a particularly horrible condition. If we ensure that coeliac sufferers are identified early, we can save them from other conditions.
Evelyn Jackson took the initiative of writing to everyone who is involved in Borders banquet 2007, which is a celebration of Borders food. She suggested that they advertise a gluten-free diet and I am pleased to say that Churches hotel and restaurant in Eyemouth took up her suggestion—the hotel deserves a mention for doing that. The more awareness of the need for gluten-free diets that we stimulate, perhaps the further the price of gluten-free products will come down. Greater awareness and more demand for products are not the only way to reduce prices, but they would have a beneficial effect.
I, too, would like to thank Margo MacDonald and Coeliac UK for this morning's presentation and for securing this debate. I will start on a serious note and finish on a perhaps lighter note.
I was able to attend this morning's presentation. We heard harrowing stories, among which was the story of Yvonne Murray's daughter, which Margo spoke about earlier. We also heard the story of another child who was almost at the point of death before being diagnosed. The child almost died from a condition that is eminently treatable—that is really frightening. The stories that we heard were so harrowing that I found myself thinking about children whom I knew years ago when I was a community paediatrician and I wondered how many cases I might have missed.
We have heard that one in 100 people in our population might have coeliac disease. It is a very common condition, but it is readily diagnosable and readily treatable. To me, coeliac disease is an eminently good candidate for a population screening programme. The Official Report might like to record that I have a plaster on one of my fingers; I was tested this morning and am happy to say that the result was negative. The test was almost painless and was very quick and effective. As we have heard, it is not particularly expensive. I therefore wonder whether consideration could be given to population screening for the disease. As I said, the disease is very treatable. However, the effects of the untreated condition are devastating.
Again as we have heard, once it has been diagnosed the disease is treated with a gluten-free diet. So is that all right? Well, not quite. It is not quite as simple as that—although such a diet can transform people's lives. We have heard about the costs of gluten-free products and we have heard about prescription products, but people who suffer from coeliac disease are not automatically exempt from prescription charges. If they are exempt for other reasons, they will not have to pay the charges, but otherwise they will. We have heard that some health authorities down south are restricting what is available on prescription. I seek reassurance from the minister that that will not happen here.
We have heard about labelling issues for ordinary food. When something is labelled as being gluten free, that is fine—although some labelling can be difficult to follow. However, sometimes we know that food should be gluten free but we might not be sure about it.
Eating out must be a minefield for people who suffer from coeliac disease. I was thinking about that because today is Valentine's day—a day when a lot of people eat out. We all know that today is Valentine's day—apart from Rob Gibson MSP. Choosing from a menu can be difficult. Avoiding pasta and having a dish based on potatoes or rice should be all right, and meat and vegetables should be all right because they are naturally gluten free, but the dishes might not be gluten free because wheat flour is often used as a thickener for sauces. Can we be sure that we know what we are getting in restaurants?
I said that I wanted to finish on a lighter note. I have made up a Valentine's rhyme for Coeliac UK. It goes:
Violets are blue,
Roses are red.
Watch out for the gluten,
It's not just in the bread.
Gordon Banks MP and I came to an understanding one day when I turned up with him at Tayside police: he was puzzled because I had a different plate of food from everybody else's, and I ended up sharing it with him. I am the one in a hundred in this Parliament. The disease was diagnosed only five years ago.
I congratulate Margo MacDonald on securing the debate. Some of the things that have been said are very apt. My condition was picked up simply by an annual medical at the diabetes clinic. Four weeks later, I received a phone call saying, "Oh, by the way, we think you might have coeliac disease." They wanted me to go back so that I could go through the usual rigmarole to find out.
As I had a tube stuck down my throat, I heard the surgeon saying to the nurse, "Look at that—classic pavement syndrome." The inside of my gut apparently looked like a pavement.
Too much information.
As others have said, the problem means that there is no absorption of anything. I had thought that I was doing rather well on my diet, but I found out the hard way that I was not. Because of one of my symptoms, my condition had earlier been misdiagnosed.
Eleanor Scott spoke about the minefield of eating out. Another example could be eating on flights. We might have booked a meal in advance for a flight across the world, and on the flight the cabin crew might say to you, "There you are—there's your plate of salad. We know you're a vegetarian." As a former beef farmer, I can assure members that that is not a pleasant experience.
In my early days in pharmacy, we had coeliac patients and tried to get them food on the NHS. One Christmas, a GP came to me and said, "You manage to get fresh bread for people." There was a special bakery that did deliveries of fresh bread. The GP continued, "I've got this gentleman and I want to give him a treat for Christmas." I had to go through all the pages of everything under the sun until I eventually found a tin of Christmas pudding that the gentleman could eat. The GP gave me a prescription for it, which was allowed, and I gift-wrapped the pudding and sent it round to the gentleman. He had not had a pudding for years. He had been told that no such thing was available for him. Little things like that pudding can make a difference.
The reactions to the problem can be very severe among young children. We have had such things explained to us at huge length in relation to diabetes and so on. I believe that, if we are going to do any testing, we should be doing more food allergy testing. That is an increasing problem, whether it is to do with milk or gluten.
The community pharmacist I know would be happy, under the new contract, to take on board such testing, but there is obviously a cost. Combined testing could be done for diabetes and coeliac disease. I hope that the producers of tests might be working in that direction. I give members a little warning that there will be a display by Diabetes UK next week in the garden lobby, and it will be carrying out various blind tests and so on. Perhaps we should ask Coeliac UK to link up with Diabetes UK for some programmes. In Aberdeen, Coeliac UK runs special cookery events to give people more of an understanding of the condition.
The most important thing of all is labelling, notably in restaurants—including in the Parliament's garden restaurant. The staff know that I have a problem with food; I ask what I can eat and they will tell me which things I cannot have. I often find that staff in the Parliament will walk in behind me so that they can find out, without saying anything, what food does not have flour in it. The most awful day was when I ate in the Parliament and discovered that, amazingly, wheat flour had been added to the mashed potatoes, the thought being that that would fill people up. That is nonsense—and there is no labelling in the Parliament. We really have to address that.
After Maureen Watt's speech, we have time for two brief contributions by Alex Fergusson and John Home Robertson.
I, too, thank Margo MacDonald for bringing the issue of coeliac disease to the attention of the Parliament today. I apologise for not being able to attend the breakfast briefing this morning—I had a late engagement in my constituency last night.
Like many members attending the debate, I had heard of coeliac disease and know some sufferers, but the extra information that we have learned today has been invaluable. I would be pleased to be involved in highlighting this auto-immune disease. The fact that one in a hundred people have coeliac disease is alarming; the fact that four out of five people do not know that they have it is very worrying indeed.
On average, coeliacs will suffer the symptoms for 13 years before diagnosis. Coupled with the fact that they will have visited their doctors twice a year with the symptoms, that must be extremely distressing for those involved. It is that lack of awareness of the disease that the minister and Health Department officials must address with GPs, nurses and others. The number of days lost through misdiagnosis or non-diagnosis must be costing the country millions of pounds. The drop in the number of days lost by people who have been diagnosed, from 21 days per annum pre-diagnosis to three days per annum post-diagnosis, is startling, and it shows, as Euan Robson said, how much better their lives must be after they have been diagnosed.
I congratulate Coeliac UK on its work and on its raising awareness here today and among the public in general. I hope that, with that raised awareness, the price difference between gluten-free products and the products that we usually buy is decreased. Few sufferers can get the right products on prescription unless they are getting free prescriptions for some other reason.
The fact that diagnosis of coeliac disease can prevent other conditions, such as cancer, osteoporosis and infertility, must make it beneficial to the health service and save it costs in the long run. It is important that awareness of coeliac disease and the measures that need to be taken become common knowledge. Just like schoolchildren and their parents are made aware of the problems of fellow pupils with nut allergies, people must be made aware of the products that those with coeliac disease can and cannot eat. As others have mentioned, we should not forget the gravies and other sauces that go with food.
Like other members, I hope that the test for coeliac disease becomes more widely available. It seems a good idea to be able to take it in pharmacies, which could offer a long-term saving for the health service. I look forward to hearing the minister's views and to taking the test with a kit myself.
I am enormously grateful to Margo MacDonald for securing the debate. I am also grateful to her for organising this morning's breakfast briefing—although, perhaps, for a slightly different reason from those of other members. Gordon Banks MP, who made a good contribution to the briefing, was modest about his role in putting together the all-party parliamentary group on coeliac disease in the House of Commons, but he was slightly less modest about his feats as England's former goalkeeper. I could not resist the opportunity of ensuring that the Scottish Parliament witnessed the first meeting of those two footballing greats, Gordon Banks and Alex Fergusson.
As many members have said, Yvonne Murray's contribution this morning was incredibly emotive and extremely effective. I commend her whole-heartedly for the work that she is now doing on behalf of Coeliac UK.
I hear exactly what Sylvia Jackson said about a screening programme but it seems to me that huge strides could be made easily in that field simply by raising GPs' awareness of the condition and of the simple test that is needed to identify it. That came home to me personally recently, as my wife has been undergoing tests for one of the many unexplained conditions that seem to abound nowadays. When I asked our good, young and on-the-ball GP whether he had tested for coeliac disease, he looked puzzled and said that he had not thought of doing that. That must be an incredibly simple thing to correct. The Executive should ensure that all GPs test for coeliac disease when the right symptoms are placed in front of them. The rewards to the NHS would surely be enormous and the benefit to thousands of sufferers would be absolutely incalculable.
Since the debate has been largely inspired by Yvonne Murray, and since I am one of the constituency members for her home town of Musselburgh, I feel enthusiastic about making a contribution to the debate.
I confess that, until the debate came on to the Parliament's agenda, I had never heard of coeliac disease. I am, therefore, grateful to Yvonne Murray, Gordon Banks, Coeliac UK and Margo MacDonald for bringing it to our attention.
Listening to the basic points that have been discussed this evening, I find it terrifying to think that there are tens of thousands of Scots who suffer from a diffuse range of symptoms but who are unaware of what is wrong with them. The debate has revealed that we need the condition to be diagnosed and that, once we have done that, we need to help people to live with the condition.
Is it good enough to wait until people have had a range of complicated conditions and gone through the gamut of options with their GPs before they are tested for coeliac disease? If it is as common a condition as is suggested, we should think about screening for it. If blood is being tested for one purpose or if people are donating blood, why not screen that blood for coeliac disease? I hope that the minister will address that point and say whether it is practical.
Thereafter, there is the question of improving the supply system for gluten-free foods. I agree that we should talk to retailers and processors about that. However, the crucial step is to improve the diagnosis and detection rate of the condition so that it can be diagnosed as early as possible in people's lives. If that can be done, we should be doing whatever we can to ensure that it is done. I hope that the minister will be able to help.
I congratulate Margo Macdonald on securing the debate and thank members for their contributions, which have effectively put across their personal experience, in the case of David Davidson, and the experience of other people who suffer from coeliac disease.
On Andy Kerr's behalf, I acknowledge the information that was presented by Coeliac UK in its breakfast briefing and the display that was available to MSPs throughout the day. Earlier today I had the opportunity to speak briefly with Yvonne Murray and others, who ensured that I was provided with some of the wide range of information that they had available. I know that a number of my colleagues, including some of those who, due to prior engagements, were unable to stay for the debate, were pleased to receive that information and will make good use of it.
This evening's debate is an opportunity to highlight the issues and raise awareness of the needs of those in Scotland who live with coeliac disease. I understand that people from throughout Scotland are in the public gallery to witness the debate and I hope that they agree that it reflected the concerns that they brought to the Parliament.
In responding to the debate, I will put our approach to coeliac disease in the context of our wider approach to the management of long-term conditions, of which coeliac disease is one. The essence of our approach is to provide services that are fully responsive to people's needs, that are delivered locally wherever possible, and that are properly integrated across health and social care. Anticipating diseases, trying to prevent them from starting and identifying them early enough to prevent complications are essential aspects of the long-term conditions model and are relevant to coeliac disease.
We recognise the knowledge of people who live with a condition, even if they do not know what it is. That is central to our approach and we are keen to encourage health professionals to acknowledge and take seriously patients' expertise in how to live with long-term conditions.
We have changed the delivery of health care in recent months and years, and community health partnerships are now key organisations in the management of long-term conditions. CHPs are intended to bring together the NHS and its local planning partners to be the point of contact for those who have long-term conditions and those who represent them. Recently, we issued each CHP with a long-term conditions toolkit that will allow them to assess the quality of the services that they provide for people with long-term conditions, including coeliac disease.
The debate has been consensual, but I am a little disappointed that the minister has not addressed early intervention. He talked about managing the condition when it has been diagnosed, but the issue that has been highlighted is the initial diagnosis. I do not know whether the minister was going to move on to that, but I am trying to accelerate him.
It is certainly my ambition to cover all the key areas. However, I need to put our approach to coeliac disease in the context of our wider approach to long-term conditions, because that is perhaps the key to the other issues that were identified in the debate.
The minister knows that I entirely support the Long-Term Conditions Alliance Scotland and mentioned it to Coeliac UK. However, if Coeliac UK is willing to come out to play, will he come out to play and meet its representatives, perhaps when the election is over and done with? A meeting should consider two things: first, early diagnosis and screening; and secondly, the evaluation of foods. That is essential, because if people cannot afford the foods, it is not much use having a good display of them on the supermarket shelf. Those are the two key issues.
I acknowledge those points, which reflect the points that Margo MacDonald made in her opening speech. Ministers will be happy to meet the organisation at the appropriate point. Margo MacDonald's point about the engagement of Coeliac UK with the Long-Term Conditions Alliance Scotland is critical to progress.
Community health partnerships are responsible for delivering locally against a range of criteria in relation to long-term conditions. Coeliac UK can influence policy and delivery at the national level through the Long-Term Conditions Alliance Scotland and through a meeting with us, but there is also an opportunity for the support groups that it represents throughout Scotland to influence community health partnerships and ensure that coeliac disease is given the priority that it deserves in the work that is done locally.
Clearly, a point that has been made during the debate is about the importance of getting a firm diagnosis as early as possible and ensuring that the right interventions are made. As we have heard, those diagnoses and interventions are critical for both adults and children, and it is simply not acceptable that the NHS may not have been able to identify the symptoms and get to their root cause in every case. It is unacceptable for the individuals involved—we have heard about the consequences for them—and for the NHS. We want the service to use its resources effectively Part of that involves effective early diagnosis, intervention and treatment.
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 to achieve an earlier diagnosis and they include the latest information on the clinical features, diagnosis and management of the disease. GPs should make full use of those guidelines in every case. Raising awareness of the condition in the general population, as we have done tonight, is vital, but raising awareness among GPs is important as well, and I acknowledge the role of Coeliac UK in doing that.
The prescription of gluten-free products has been mentioned, and such products are indeed available on prescription for people with coeliac disease. That can be helpful to many people. Food labelling is vital to people with any food allergy or intolerance or similar disease, and important work is being done by the Food Standards Agency across the United Kingdom with a wide range of interested parties to ensure that food labelling is accurate and effective.
John Home Robertson and others mentioned screening. The Long-term Medical Conditions Alliance Scotland is the key to that process, and we have a national screening committee that considers such proposals. That would be a helpful way to take forward the issues that have been raised this evening.
From the point of view of ministers and the NHS, we welcome the debate and support the objectives of Margo MacDonald and others in trying to raise awareness and ensure that people can be diagnosed as early as possible and have the best possible quality of life. I look forward to continuing to work with colleagues from across the chamber in order to achieve those aims.
That concludes the debate on awareness of coeliac disease.
I have two brief footnotes. First, having listened to the debate, I shall as Presiding Officer ask staff to report to the Scottish Parliamentary Corporate Body on the availability and labelling of gluten-free products in our canteen and restaurants. Secondly, I say to members of Coeliac UK that the Official Report of the debate will be available on the Parliament's website at 8 o'clock tomorrow morning.
Meeting closed at 17:58.