Is it Coeliac Disease? Campaign

– in the Scottish Parliament on 26th November 2015.

Alert me about debates like this

Photo of John Scott John Scott Conservative

The next item of business is a members’ business debate on motion S4M-13123, in the name of Nanette Milne, on the new campaign, “Is it coeliac disease?” The debate will be concluded without any question being put.

Motion debated,

That the Parliament welcomes Coeliac UK’s new campaign, Is it coeliac disease?, which focuses on finding the estimated 40,000 people in Scotland, and 500,000 across the UK, with undiagnosed coeliac disease; understands that around 5,000 people in the NHS Grampian area are living with the condition; is concerned that, of the estimated one in 100 people in Scotland with it, only around one quarter are believed to be diagnosed; understands that the time between the onset of symptoms and a clinical diagnosis can be a staggering 13 years; notes that the condition is treatable by switching to a lifelong gluten-free diet; acknowledges however that, if it is not treated, it can lead to serious health problems, with symptoms including stomach cramps, nausea, vomiting, regular bouts of diarrhoea, constipation, bloating, ongoing fatigue, anaemia, weight loss and constant mouth ulcers and can further lead to osteoporosis and small bowel cancer; believes that too many people have been living in the dark with the condition for too long a period, and notes the view that the Scottish Government and the NHS should help charities such as Coeliac UK in aiming to raise awareness among the public and the medical profession about the symptoms of coeliac disease so that as many as possible get the diagnosis that they need.

Photo of Nanette Milne Nanette Milne Conservative

Living with an undiagnosed health problem can be painful and exhausting and can pose a challenge to going about one’s daily life, at best, but for someone with coeliac disease, something as simple as eating a piece of toast or a bowl of pasta can result in nausea, bloating, abdominal cramps, and even anaemia, fatigue and weight loss after a time. If it is left untreated, the condition may result in osteoporosis, and occasionally it may even lead to bowel cancer.

Coeliac disease is an auto-immune condition, in which the immune system’s reaction to gluten, which is found in wheat, rye and barley, causes damage to the small intestine, and there is a resultant failure to properly absorb the nutrients from ingested food. Once it has been accurately diagnosed, it is easily treated by a lifelong strict gluten-free diet. The symptoms start to improve as soon as gluten is removed from the diet, but it can take from three to five years for the gut to heal completely.

Coeliac disease affects nearly 1 in 100 people across the United Kingdom, including nearly 5,000 people in the NHS Grampian part of my region, but at present only a quarter of those who have the condition have been diagnosed, and it can take up to 13 years from the onset of symptoms to the final diagnosis.

In Scotland, it is estimated that around 40,000 people are living with coeliac disease without being aware of it. In an effort to resolve that on-going problem, this year Coeliac UK launched a new national campaign to raise public awareness of coeliac disease and its symptoms, and to increase the number of people who are diagnosed with the condition. By promoting the “Is it coeliac disease?” campaign in general practitioner surgeries and pharmacies and through traditional and social media, roadshows and social marketing, the charity aims to have the diagnosis confirmed in 250,000 more people across the UK by 2020.

The campaign website gives information about the disease and offers an online assessment to help to determine whether a test is required. After completing the assessment, users are given a recommendation, which they can print out and take to their GP if further investigation is required. Since the website was launched in May this year, more than 30,000 people have already completed the online questionnaire.

It is known that certain groups of people—for example, people with other auto-immune diseases such as type 1 diabetes and those with a family history of coeliac disease—are at increased risk of developing the condition. If a first-degree family member, such as a mother, father or sibling, has the condition, the risk of developing it increases from one in 100 to one in 10.

Unfortunately, coeliac disease is another long-term condition in respect of which there is a wide variation in practice across health boards in Scotland, which results in the much-derided postcode lottery of care for children as well as for adults. For example, a very recent study has shown that children from the most affluent socioeconomic groups have a coeliac disease diagnosis rate that is 80 per cent higher than that for children from the most deprived areas. It really should be borne in mind by the health professionals who regularly deal with children from such areas, where some children may have malnutrition issues with similar presenting symptoms to those of coeliac disease.

Many adults are fobbed off with a diagnosis of irritable bowel syndrome when they suffer from coeliac disease. I have no doubt that contributors to the debate will have a number of examples from their constituents that will illustrate the widespread delays in achieving an accurate diagnosis. I look forward to hearing those experiences.

As of September this year, there has been a National Institute for Health and Care Excellence guideline on the recognition, assessment and management of coeliac disease, which will, I hope, encourage GPs and other healthcare professionals to promote improved diagnosis and care. It is clear that there are currently shortcomings in the system, but the benefits of early diagnosis and treatment are undeniable, and by reducing the risks of further complications or long-term morbidity, they would undoubtedly lead to cost savings in the national health service.

The variations in diagnosis and treatment of coeliac disease are of significant concern to clinicians in Scotland. Those variations are found in GP identification of symptoms, which, as I said, are often interpreted as IBS symptoms; in GP referral practice; in endoscopy waiting times from GP referral; in follow-up care; and in access to gluten-free food on prescription, although I hope that that will improve following the Government’s review of the gluten-free food additional pharmaceutical service. I would welcome the minister’s comments on that.

The endoscopy waiting time is one of the most trying for patients because by the time of referral they will usually have had a blood test to identify the antibodies that gluten consumption produces and, if that is positive, they can be 90 to 95 per cent sure that they have coeliac disease. However, they cannot start to treat that by embarking on a gluten-free diet until their diagnosis is confirmed by endoscopy and biopsy, as the result could be compromised if the gut has begun to heal by the time the biopsy is carried out. Therefore, patients have to go on suffering while they wait for an endoscopy appointment. A wait of around four to six weeks is acceptable, but I have been told that in Grampian, for instance, people can wait up to six months, which is not acceptable. I know that there are huge demands on endoscopy services as a result of the successful bowel cancer screening programme, but it is not right that coeliac patients have to suffer as a result of that.

Those variations in practice have led to Coeliac UK suggesting to the Scottish Government and Healthcare Improvement Scotland the idea of a Scottish clinical standard for coeliac disease. I would be interested to hear from the minister whether the Government is supportive of further investigation of that idea. It certainly seems to me that the adoption of an appropriate standard would iron out some of the variations in practice and lead to more equity in diagnostic and treatment times for patients.

It is clear that there is a real need to improve the rate of diagnosis of coeliac disease so that the many people who suffer its symptoms without realising what is wrong with them can be identified and started on the gluten-free diet that will resolve their problem. I congratulate Coeliac UK on its on-going efforts to make that aspiration a reality, not least in its “Is it coeliac disease?” campaign, and I hope that the Government will give serious consideration to its suggested development of a Scottish clinical standard for the diagnosis and treatment of that common long-term condition.

Finally, I record my thanks to parliamentary colleagues across the chamber for their interest in and contributions to the debate; all those who made the debate possible by signing my motion; Coeliac UK for its extremely helpful briefings; and all the coeliac sufferers who have been in touch by email and those who are in the gallery today.

The Deputy Presiding Officer:

Many thanks, and I thank Mary Scanlon for her helpful note pointing out my mispronunciation of “coeliac”.

I call Jim Eadie, to be followed by Richard Simpson. We are pretty tight for time today, so speeches should be four minutes, please.

Photo of Jim Eadie Jim Eadie Scottish National Party

I am delighted to have the opportunity to speak in the debate on behalf of my constituents who live with coeliac disease. I warmly congratulate Nanette Milne on introducing the debate to the chamber and I pay tribute to Coeliac UK for the valuable work that it does for people with coeliac disease and their families and in raising awareness in the wider community. I thank Myles Fitt, the Scotland lead for the charity, who has worked hard to educate parliamentarians about the disease and to help inform the development of Government policy in the area.

As Nanette Milne said, coeliac disease is a serious medical condition that, if left undetected, can cause long-term ill health. Therefore, we should all be concerned that only one in four people with the disease currently has a diagnosis. Like a number of members, I have been struck by the personal stories of people with coeliac disease. I am aware of one young woman in her 20s who lives in Edinburgh. She had a low iron count from the age of 16, but GPs did not detect coeliac disease and instead attributed the low iron count to hormonal issues. Her mood was also affected by the undiagnosed coeliac disease and she went for a couple of years thinking that she was depressed. She said that having a low mood was like having the energy sucked out of her body. She was eventually diagnosed with coeliac disease.

There needs to be greater awareness among our healthcare professionals of the symptoms of coeliac disease, which can include low iron count, tiredness and low mood. As Coeliac UK and Nanette Milne have said, certain groups are at a greater risk of coeliac disease and it is therefore vital that there is greater awareness among healthcare professionals of those groups as well as greater availability of testing of people who are at risk. One of the at-risk groups is people with irritable bowel syndrome. It is estimated that one in four people with coeliac disease has previously been misdiagnosed with IBS. Therefore, Coeliac UK would like to see testing for coeliac disease among people who have an existing diagnosis of IBS.

As Nanette Milne said, coeliac disease is genetic and can run in families. The condition is more prevalent among those who have a history of it within their family, which increases the chances of having it from one in 100 to one in 10. If we are to treat the 40,000 people in Scotland who are currently living with undiagnosed and untreated coeliac disease, there is a role for the Scottish Government and for the NHS to encourage more testing of those who are at risk.

Coeliac disease can be treated without medication, and currently the only treatment is a gluten-free diet. For that reason, I am pleased that, following an 18-month pilot, Scotland is now leading the rest of the United Kingdom by providing a gluten-free food service, which is available from pharmacists. That means that coeliac patients and those with a clinical need for gluten-free food will be able to access it directly from their local pharmacy, rather than needing to go to their GP. That allows patients direct access to the gluten-free food that they need and reduces the workload of GPs.

Sarah Sleet, the chief executive of Coeliac UK, said:

“Coeliac UK is delighted the Gluten-Free Food Service is being incorporated into NHS services provided by community pharmacies in Scotland. The Service received strong backing from our members as it empowers them to make informed, varied and responsible decisions about the gluten-free food they need, whilst freeing up valuable GP time.”

She went on:

“Gluten-free food on prescription plays a vital part in helping those with coeliac disease stick to the diet and to stay healthy.”

The decision recognises that, at present, the provision of gluten-free food in supermarkets is not adequate or affordable for people who have coeliac disease. For that reason, gluten-free food on prescription remains essential for people who are diagnosed with the condition. I hope that the minister will commit today to continue to provide that essential service within the NHS for as long as is necessary to meet the needs of people with coeliac disease. The charities, the public, the Scottish Government, the national health service and all our healthcare professionals need to work together to raise awareness of the disease among healthcare professionals and the wider public. If we do that, we can make further progress in diagnosing and treating people with coeliac disease, so that those people receive the treatment that they need and are entitled to receive.

Photo of Richard Simpson Richard Simpson Labour

I join other members in congratulating Nanette Milne on obtaining this debate. I think that it is the first debate on the issue since Margo McDonald’s in February 2007. The figures remain roughly the same. At that time, Margo McDonald said that some 50,000 Scots could be sufferers and that significant numbers—almost the same as Nanette Milne quoted today—had not been diagnosed.

The website to which Nanette Milne referred, which provides a questionnaire, is helpful in its signposting, because a lot of people are unaware of the condition. The blood test, which was only just becoming available in 2007, is very helpful, but it can result in false negative results. It is not a sufficient test on its own, although it works better on children.

More than 40 years ago, when I was a very junior doctor in paediatrics, I remember trying to administer a Crosby capsule, which children had to swallow so that a sample of the bowel could be obtained. Obtaining such a sample is the only way in which a definitive diagnosis can be obtained.

I also remember, in my first year as a general practitioner, being called to see the older child in a house in which there were two young children. When I entered the room I went straight to the larger child, only to be told that I had been called for the smaller one. I could not really understand why the child should be small, given what the family was like. Some very simple questions elicited the fact that the child had symptoms of coeliac disease. I am glad to say that we achieved a diagnosis within a few weeks. Within a few years, the child was larger and taller, and could beat up his brother instead of being beaten up. That demonstrates that recognition and diagnosis are really important.

Has the Government had any discussion with the Royal College of General Practitioners, to ensure that every adult who has been diagnosed with coeliac disease has their children tested? It is a genetic condition. Are people with conditions such as type 1 diabetes, auto-immune thyroid disease, Down’s syndrome and Turner’s syndrome—conditions that are associated with a higher prevalence of coeliac disease—being tested? Do GPs automatically do that? We have the electronics and the computer systems that should automatically flag up the issue, and those people should be tested.

Once people get coeliac disease, associated conditions need to be excluded, including, as Jim Eadie said, irritable bowel syndrome. The symptoms of irritable bowel syndrome can be caused by coeliac disease, but someone who has coeliac disease can get irritable bowel syndrome. Other conditions include lactose intolerance, bacterial overgrowth, microscopic colitis and inflammatory colitis.

Many adults are not diagnosed until well into adult life. If the condition is not treated adequately, osteoporosis becomes a significant factor. The annual review proposal in the NICE guidelines should include a review of possible osteoporosis. There is a need for dual energy X-ray absorptiometry—DEXA—scans, in line with NICE guidelines. I regret the fact that, despite undertakings given to me in 2010 by NHS Forth Valley that it would have a full osteoporosis service, that is still to be delivered. It is the only health board in Scotland without such a service, so I ask the minister to use her office and authority to require NHS Forth Valley to introduce it. It is at least five years behind everybody else.

People with coeliac disease can suffer from anxiety and depression, and they can get lymphoma and small bowel cancer. Like Nanette Milne, I cannot find Scottish intercollegiate guidelines network guidelines. There are the NICE guidelines, but we need a Scottish standard. I would very much support a call for that.

Genius Foods in Edinburgh, which was founded by Lucinda Bruce-Gardyne, is a fantastic company that has grown enormously to be a brand leader. It is exactly the sort of company that we need to promote in a niche market. Its growth is extremely welcome.

Photo of Alex Fergusson Alex Fergusson Conservative

The last time that I debated coeliac disease in this chamber was, as Dr Richard Simpson just pointed out, at the behest of the late Margo McDonald, in the second session of Parliament. I had not intended to speak in the debate, but it was attended by Gordon Banks MP, who was in the visitors gallery for the debate as chair of Westminster’s all-party parliamentary group on coeliac disease and dermatitis herpetiformis. I am afraid that I could not resist the temptation of pointing out the unique nature of the debate in bringing together those two footballing giants: Gordon Banks and Alex Fergusson. [Laughter.]

Coeliac disease, on the other hand, is no laughing matter. As the statistics highlighted in the motion before us so accurately show, the fact that, 10 years on from that debate, we still have an estimated 40,000 undiagnosed coeliac sufferers in Scotland is just not good enough, particularly given that diagnosis is advancing and becoming easier and that dealing with the disease is becoming ever easier as gluten-free products become commonplace in more retail outlets.

The difference that diagnosis can make is absolutely stark. I will quote from an email that I received from a constituent, who wrote:

“My mother was diagnosed in 2006 by her GP following a mental breakdown. We think her body was so malnourished from years of malabsorption that it was not functioning properly. She is unable to recall the events that took place over a number of weeks. The transformation following diagnosis has been unbelievable. She is now back to her usual self and is also now a healthy weight, having been underweight all her life. Interestingly, it runs in our family. My mother’s twin sister is also coeliac and we have another three family members who ... are not coeliac but feel that their health is much improved on a gluten-free diet.”

My own family has members who would absolutely relate to that last point. She finishes off by saying:

“To think that there could be 40,000 people in Scotland who have the condition but are undiagnosed is alarming.”

It is indeed.

That is as good an example as I can find of the literally life-changing difference that an accurate diagnosis can make. The answer must be to make GPs more aware both of the need to test for coeliac disease and of the need for earlier intervention.

I welcome Coeliac UK’s campaign to raise awareness among the public, but particularly among the medical profession.

I commend my colleague Nanette Milne for bringing this debate to the chamber and I am very pleased to support the motion in her name.

Photo of Alison McInnes Alison McInnes Liberal Democrat

I, too, congratulate Nanette Milne on securing this important debate. As Dr Milne explained, around 40,000 people in Scotland are estimated to have the condition, yet about 75 per cent of them do not have a coeliac diagnosis. For those who do, it took on average 13 years from the onset of symptoms to a proper diagnosis. Every time I hear that statistic, I am shocked. Coeliac disease is a serious medical condition and, for those with severe symptoms, going undiagnosed can result in a hugely debilitating condition.

That is why I am pleased to welcome Coeliac UK’s “Is it coeliac disease?” campaign, which was launched earlier this year. That should be a simple question that is much more at the forefront of GPs’ and pharmacists’ minds. That is because a proper diagnosis followed by a gluten-free diet leads to the symptoms abating and leads to reduced risks of long-term complications. Importantly, that significantly improves individuals’ day-to-day quality of life.

Thousands of people are unnecessarily suffering fatigue, nausea and sore stomachs. They face repeated visits to their GPs and often end up being misdiagnosed as having IBS or a stress-related illness. That is why early intervention is important.

I was interested to learn of the proof-of-concept project managed by the National Association of Primary Care to explore the use of community pharmacies in recognising coeliac disease early. In that, customers who presented at a community pharmacy with a prescription or who purchased over-the-counter medicines for IBS and/or anaemia, which may be consistent with having coeliac disease, were given information about the project.

Those who agreed to participate were offered a finger-prick blood test that looks for the antibodies that are produced in coeliac disease. They were also asked to complete a brief questionnaire about their symptoms. The pharmacist discussed the results of the test with the customers and gave them an information sheet about the proof-of-concept project and the results of their tests. The customers could then decide, where appropriate, to discuss the results with their GPs, including discussions about further blood tests.

Out of 551 participants over a number of months, there were 52 positive tests for coeliac disease. That 9.4 per cent level of detection is very good, given that only 1 per cent of the general population has coeliac disease. It shows that targeting those who present with similar symptoms can be effective, and I hope that that proof-of-concept project can be built on.

In the short time that I have left, I will mention teenagers and young adults with coeliac disease. My daughter was diagnosed with coeliac disease while she was a student, after some years of discomfort that interfered with her studies. Not once was gluten intolerance considered, until the family suggested testing.

Too often, particularly with young students, GPs tend to assume that the sometimes vague and varied symptoms are stress related. I would be keen for Coeliac UK to take its campaign into student health centres, campus pharmacies and GP practices in areas that have high concentrations of students.

For young people who are away from home as students, there can be a lack of continuity, as they are no longer registered with the family GP. Even once they are diagnosed, there can be difficulties for young people. It is difficult to stick to a strict gluten-free diet; they can be anxious about eating out and socialising; and they have concerns about cross-contamination when accommodation and kitchens are shared.

That is why it is good to know that Coeliac UK runs a support group that is specifically for young adults, which is called gluten-free under-thirties—GUTs. The group aims to provide a supportive network to young adult members in which they can all give each other helpful advice on living with coeliac disease. That can be anything from tips on gluten-free restaurants or beers to advice on moving out of the family home, starting in a new workplace or explaining coeliac disease to new university friends.

I again thank Dr Milne for highlighting the campaign and Coeliac UK for its continuing work to highlight this underdiagnosed condition.

The Deputy Presiding Officer:

Because of the number of members who wish to speak, I am minded to accept a motion under rule 8.14.3 of standing orders to extend the debate by up to 30 minutes.

Motion moved,

That, under Rule 8.14.3, the debate be extended by up to 30 minutes.—[Nanette Milne.]

Motion agreed to.

We move to the next speaker, who is—[Interruption]—it is Bruce Crawford, to be followed by Jim Hume.

Photo of Bruce Crawford Bruce Crawford Scottish National Party

Thank you, Presiding Officer. I am glad that you grasped my name so easily.

I sincerely thank Nanette Milne for bringing this important motion to the chamber. We sometimes forget the power of members’ business debates. Today’s debate is a good example of the power of the words that we can speak in this chamber to increase not only our knowledge but the knowledge of those furth of the Parliament. Nanette Milne has done us a favour in bringing us here to debate this subject.

Others have well described some of the symptoms that their constituents have suffered and some of the agonies that they have gone through during their lives. I cannot imagine what it must be like to have such a long delay in diagnosis—that has an impact not only on a person’s health and on them as an individual but on their family and friends, too, because the condition is debilitating for all who are involved.

One of my constituents from Stirling, a lady called Grace Tweddle, asked me to tell members her story. It is a short story that moved me, which is one of the reasons why I wanted to take part in the debate. She said:

“I began to exhibit symptoms of this disease at 18 and was not diagnosed until I was over 40.

This meant my working life was dogged by health problems and I had to abandon my chosen career—teaching.

I undertook further training and became a University of Glasgow secretary and had to abandon this job. Last of all I became a bookseller but had to abandon that too.

This meant my earnings were severely affected as was my pension.

Worse than that, I suffered a miscarriage and problems with conceiving afterwards and such problems have been attributed to the effects of coeliac disease.

I became so ill after 20 years that I considered suicide. I was only saved from that drastic step by diagnosis.”

That story told me a great deal about people in such circumstances. It is not acceptable that Grace Tweddle had to wait so long for a diagnosis. I thank her for being courageous enough to give me that story to share with Parliament.

Before the debate, I went to the back of the chamber to pick up some of the printed evidence for members on the topic. I was somewhat heartened to see the circular that NHS Scotland issued on 23 September regarding the review of the gluten-free food service. The Scottish Government has agreed to a number of the review’s recommendations and it has noted the favourable responses from patients and stakeholder groups to the trial of the gluten-free food service. The service has been permanent as part of the NHS community pharmacy contract since 1 October.

That is a step forward, but we have heard members describe the other actions that need to be taken to produce further steps forward. The NHS circular recognises and reflects on the variations in approach between the various health boards—Nanette Milne mentioned that—and asks the boards to take that into account in formulating their future policies.

It will be helpful for people such as Grace Tweddle, following their diagnosis as coeliac, if we ensure that the review’s recommendations about further monitoring and evaluation of the annual pharmacy coeliac health check are taken on board.

Those are helpful steps forward, and I hope that the Government will outline today the further steps that it is taking. I thank Nanette Milne again, and I thank my constituent Grace Tweddle.

Photo of Jim Hume Jim Hume Liberal Democrat

I congratulate Nanette Milne on bringing to the chamber this important debate. Like other members, I have friends and constituents who are affected by this debilitating disease. It affects tens of thousands of people in Scotland, most of whom are unaware that they are coeliacs. Approximately one in every 100 people has the disease, which can be debilitating.

There is debate about how many people are undiagnosed. Coeliac UK states in its briefing that 24 per cent of those with the disease have been diagnosed, whereas the Government’s review of September 2015 suggested that the figure lies between 10 and 15 per cent. Nonetheless, we know that a large number of people remain undiagnosed, and Coeliac UK estimates that the total is in the region of 40,000, which is a significant amount.

I back Coeliac UK’s campaign to reach out to those people and inform them of the support that they can receive. Just like diabetes, coeliac disease and dermatitis herpetiformis can affect the quality of life of any person if they are left undetected. With an average 13-year timespan between symptom onset and a clinical diagnosis, the time to raise the warning flag is now, so a discussion of the subject is a good use of a members’ business debate.

Anyone who suffers or is suspected to be suffering from coeliac disease must be supported to obtain the correct diagnosis as promptly as possible. Given that there is as yet no medical treatment for the disease, it is equally important that information is available for all those who are diagnosed as coeliac on how to manage their lifestyles.

As Coeliac UK notes, the only treatment is a strict lifelong gluten-free diet. The health secretary’s announcement last month of the gluten-free food service is to be welcomed. The ability of people to continue their lifestyles with the right support is critical if we are to create sustainable health programmes. The programme also shows how much we can achieve and improve patients’ lives by listening to their needs.

Giving staple foods such as bread, flour and pasta to clinically diagnosed coeliac patients is a step in the right direction. Where we can support patients to have the information and knowledge on how to self-manage coeliac disease, we must do so.

I was contacted recently by constituents and experts about coeliac disease. While the experiences of those constituents with their doctors and nurses have always been exceptional, there still remains—as we have heard from other members—a risk of misdiagnosis.

Coeliac disease, and the fact that the only solution is a gluten-free diet, has not garnered the necessary attention, which contributes heavily to the problem. Patients and doctors both risk misattributing the characteristics of coeliac disease and not getting the correct diagnosis and treatment. I hope that, through the debate, people will become more aware of a condition that might cause ill health for them or someone they know or love.

Obtaining the right diagnosis is important as soon as a person begins to feel unwell. Given that on average there is 13 years between the onset of symptoms and the diagnosis of coeliac disease, and given that we have an ageing population in Scotland, the disease could be a compounding factor that affects the capacity of our NHS.

I welcome the progress that we have seen through many eating establishments and retail outlets marking their products as gluten free, and I encourage all to do that. I reiterate my support for the provision of staples through the NHS gluten-free food service and note the need to continue the innovation in providing treatments and creating a more sustainable, proactive and supportive NHS. I thank Nanette Milne again for raising awareness of the issue and I reiterate my support for Coeliac UK’s campaign.

Photo of Christine Grahame Christine Grahame Scottish National Party

I, too, congratulate Nanette Milne on securing this debate on Coeliac UK’s campaign to advance public awareness of coeliac disease.

We in the Parliament have been not too bad on the issue. Dr Simpson, Dr Milne and I are aware of how the Parliament in its early days raised awareness of the disease, when I had no idea what coeliac disease was. Members have talked about the NHS, but I will talk about the dangers that lurk out there for those with coeliac disease when they eat out.

One of the unseen dangers for those with coeliac disease lies in sauces and gravies that accompany meals. I defer to my medical colleagues for professional analysis of what can happen, but I had a colleague who suffered from coeliac disease who made intense inquiry in a restaurant as to whether there was any wheat in the food and was assured that there was not. However, the restaurant completely forgot about the gluten in the sauce and the gravy, with the result that in a very short time my colleague was very ill, because they were poisoned by the gravy that they had eaten.

That was a lesson to me that we need to make restaurants and fast-food retail outlets more aware of the issue so that they are alert to what coeliac disease is and to the impact that eating food containing gluten—particularly sauces and gravies—can have on those with coeliac disease. Establishments are already aware of what happens when people have nut allergies—we are all very aware of that—but I do not think that they are aware of what can happen to someone who has to have a gluten-free diet.

This is a short contribution, but I want to mention an angle that has not been spoken about. I do not know whether, at cook schools, the novice cooks who will become the chefs of tomorrow are expected to learn about allergies to nuts, gluten and so on. If they do not learn about that, I have a suggestion for Coeliac UK. I have been busy watching “MasterChef: The Professionals” on the television. The programme has a skills test, which last night was a horrendous one that involved taking the skin off a pig’s trotter. I suggest that it should have a skills test that involves providing a gluten-free, three-course meal. That could look at whether the cooks included ingredients that contained wheat products, whether in the main meal or a sauce, to test whether they knew what they were doing. That is something for the BBC to consider: a skills test on “MasterChef” that involves making a gluten-free, three-course meal.

Photo of Maureen Watt Maureen Watt Scottish National Party

We have had a very interesting debate with interesting contributions. I thank Nanette Milne for bringing the campaign and the issue to the attention of Parliament. I, too, welcome the campaigners to the public gallery.

I very much welcome the work that Coeliac UK does in providing advice and a supportive service to many, including newly diagnosed patients and their worried relatives and carers. Coeliac UK’s research funding has helped to highlight important issues such as the increased incidence of children developing coeliac disease. The “Is it coeliac disease?” campaign that was launched in May is to be commended for raising the profile of this life-changing condition among the public and healthcare professionals. I am aware that public events are being held across the country next year to continue the campaign and alert the public to the symptoms of the condition.

Like other MSPs, I have had constituents with the condition contact me with their problems to do with a lack of diagnosis and some of the related conditions that members have mentioned. It is hugely concerning that many people live with the symptoms for many years before they are correctly diagnosed with coeliac disease. As others have said, Coeliac UK states that the average time between the first onset of symptoms and a clinical diagnosis can be a staggering 13 years. Those delays can be down to various factors including delays in individuals seeking help and misdiagnosis. Campaigns that raise awareness of the condition and its symptoms are therefore vital.

The delays are especially concerning given the complications of coeliac disease. It is interesting that the helpful online questionnaire that Nanette Milne mentioned has already been filled in by 30,000 people. That absolutely shows the need for it. The symptoms of coeliac disease range from mild to severe. It is unacceptable that too many people with such worrying symptoms have to wait so long to find out that their condition can be effectively managed by a strict gluten-free diet.

As Bruce Crawford outlined, NICE guidelines on the recognition, assessment and management of coeliac disease were published in September.

Richard Simpson and Alex Fergusson mentioned our previous debate on the subject. I recall being in the chamber at the time and I remember that George Reid, who was in the Presiding Officer’s chair, undertook to ensure that gluten-free products were available in the restaurants in this place.

Making the adjustment to a gluten-free diet can be significant, and that is why I am proud that we recently made the gluten-free food service easier for patients to access. Gluten-free food products have been available on prescription for a number of years on the advice of the UK Advisory Committee on Borderline Substances, which is responsible for advising on the prescription of foodstuffs and toiletries. In Scotland, those who are clinically diagnosed with coeliac disease can be prescribed essential staples such as bread, flour, pasta and cereal.

To support that important service and make it easier to access, we have introduced the gluten-free food service in NHS community pharmacies across Scotland. Through referral by GPs, the service enables eligible patients to register with a community pharmacy of their choice and collect their repeat prescriptions for gluten-free food directly from the pharmacist rather than having to request individual prescriptions from their GP.

Following a substantial review of the service this year, I am pleased that patients are finding it easier to vary their orders, and pharmacists tell us that they have a positive experience of delivering the service. The scheme benefits patients by offering them easy access to the gluten-free foodstuffs that they need and it frees up GP time from writing repeat prescriptions for gluten-free products. I am also pleased that the Scottish Government has provided funding to improve priority specialist services including gastrointestinal disease services.

It is hoped that improvements to care pathways will mean that diagnosis, treatment and follow-up reviews can be improved. NHS Tayside, which started work in that area in 2010, has produced an adult care pathway that meets the new 2015 NICE guidelines. Its pathway aims to reduce variation, harm, waste and health inequalities, and it has provided support to staff and patients in adhering to the pathway. That work has been closely aligned with Coeliac UK in Tayside, which has allowed for constant co-design of the pathway.

I understand that overall waste, variation and harm around the patient pathway have reduced since implementation, and that improvement is to be welcomed. I encourage NHS boards to do all that they can to share that best practice and, where possible, adapt it locally so that it can be used for the best care of patients.

Photo of Nanette Milne Nanette Milne Conservative

I welcome what the minister has said about the development of a coeliac disease patient pathway in NHS Tayside. Does she think that we can explore the possibility of extending the approach to the whole of Scotland?

Photo of Maureen Watt Maureen Watt Scottish National Party

Yes, I absolutely do. We want to ensure that other health boards are aware of the clinical pathway in Tayside and how it has reduced health inequalities among people with coeliac disease. The approach should be adopted by other health boards. Coeliac UK recently convened a group to look at developing a national Scottish coeliac disease pathway, and I very much welcome that development, as I do the development in Tayside.

I also welcome the collaboration between Coeliac UK and Fife Council on the introduction of gluten-free options in primary school menus, as a result of which a new school menu was launched throughout the area in October.

Photo of Christine Grahame Christine Grahame Scottish National Party

On that issue, my comment about “MasterChef” was not light-hearted. Is there a role for the health minister in getting the food industry and particularly the catering industry to understand coeliac disease and its impact on people? I think that there is a little crack in the system in that regard, and that people can accidentally eat something that contains even just a little bit of wheat and be made very sick indeed.

Photo of Maureen Watt Maureen Watt Scottish National Party

I agree with the member. This is where consumer choice comes in, so that people ensure that they go to restaurants that offer gluten-free food and urge restaurants that do not do so to change their approach. To be fair, more gluten-free products are on the menu in restaurants than was the case many years ago—we have probably all seen that. Sufferers and others need to constantly chivvy along restaurants and eating places to introduce gluten-free options on the menu and make chefs aware of the extent to which products such as gravy thickening contain gluten—the member has privately told me her story about that.

The project in Fife is something from which other schools can benefit and is enabling primary school-age children with the condition to benefit from healthy social interaction with their classmates in the canteen at mealtimes, rather than being excluded. Such interaction is an important part of a child’s development. Fife Council’s efforts in realising the project are laudable and its supplementary schemes, such as training programmes to improve staff’s knowledge and awareness of coeliac disease and the products that exacerbate it and parental meetings to gather feedback, illustrate the council’s commitment to the project’s success.

The Scottish Government welcomes Coeliac UK’s awareness campaign and what the charity is doing to highlight the condition. Members of the Scottish Parliament and I, as Minister for Public Health, have a duty to highlight the condition. I wish Coeliac UK every success with its campaign and continued success in the future.

13:18 Meeting suspended.

14:30 On resuming—