Hansard

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.