Coeliac Disease

Debate between Lord Beamish and Gordon Banks

Wednesday 7th September 2011 Westminster Hall

[Gordon Banks]

My hon. Friend is right. The range has improved, as indeed has the quality of food. In some ways, perhaps I was fortunate to be diagnosed in the past 10, 12 or 13 years. I am glad that I was not diagnosed 25 years ago, because I did not have to eat the rubbish that one had to eat 20 or 25 years ago to try to survive on a gluten-free diet. There is more choice. That is another issue about which we have concerns following the introduction of new regulations. We are worried about how supermarkets will react, because everything that they do is driven by the desire and the need to make profit at the end of the day.

I want to talk about my own experiences without being too graphic. In the early 1990s, feeling unwell I went to my GP, who eventually referred me to a specialist. After having cameras inserted everywhere, I was diagnosed with duodenal ulcers and put on medication. Unsurprisingly, that did not help much. I was then diagnosed with the catch-all complaint of irritable bowel syndrome. I endured a number of years where my routine comprised of largely being locked in the toilet until about 11 o’clock in the morning, and I had a rash on my face that looked like I had exfoliated with 80-grit sandpaper. I returned to my GP after a number of years and he referred me to another specialist who, simply on reading my notes, said, “I think I know what’s wrong with you. I think you have coeliac disease,” and he was right. If my memory serves me right, his name was Dr Wright and he turned out to be a bit of a wizard in the diagnosis of coeliac disease in the Forth valley and Scotland. I and others will be eternally grateful to him for that.

Hon. Members might be wondering why there has been a personal lesson from me and whether it is designed to foster sympathy. No, it is not. It is designed to highlight the fact that, as I have said, the average time for diagnosis in the UK is 13 years. That is sometimes 13 years of not being able to work; 13 years of worry about dying; 13 years of someone worrying that their wife thinks they are dying; and 13 years when the only people who are happy are the manufacturers of toilet roll. Part of the purpose of today’s debate is simply to stress that that is not good enough. Much more needs to be done to recognise coeliac disease and the array of symptoms in people presenting to a GP. They should not be told what my GP said to me when I returned to him after being diagnosed: “Oh coeliac disease. I never think of that. That’s two I have missed this month.” That is not good enough.

Why is it important to improve diagnosis times? It saves being given expensive drugs for other complaints that are totally unnecessary and, as I said, it saves a sufferer from not being able to lead anything like a normal life in all areas of work, rest and play. Early diagnosis reduces the risk of intestinal cancer, bowel cancer and osteoporosis among other things. In effect, early diagnosis saves not only lives, but money.

There is no cure for coeliac disease, which leaves the NHS with the task of managing sufferers’ condition. For me, diagnosis happened in my early 40s. However, that is not good enough and there remains a lack of guidance in the area. In 2009, the National Institute for Health and Clinical Excellence published guideline 86 on the recognition and assessment of coeliac disease. That short clinical guideline offers best-practice advice on the recognition and assessment of coeliac disease and the care of those undergoing diagnosis. Although that guideline was a great result for people with coeliac disease, it is not mandatory to follow it and more needs to be done.

Coeliac UK—the national charity for people with coeliac disease—has worked with NICE on that guideline, forming part of the guideline development group. It is anxious to take the matter further for very good reasons. Gastrointestinal disorders account for about 10% of NHS clinical work, and there is evidence that they are not always well managed in general practice. Few quality criteria are available to guide the management of such disorders. The treatment of coeliac disease requires support, with a gluten-free diet, the monitoring and management of symptoms and the screening and management of complications and other associated conditions for the rest of the patient’s life. There has been huge oversight on the part of the Department of Health, as GPs are struggling to meet targets for diagnosing conditions on the quality and outcomes framework and, with no points for gastroenterological conditions, there is an enormous gap.

The QOF is a key way to ensure that GPs are incentivised and is a means by which we could start to see an improved and accelerated rate of diagnosis and find the 500,000 people who are living with the condition but who do not know it. Sadly, a number of applications to QOF have been unsuccessful, which is not good news for people with coeliac disease.

[Mr Kevan Jones (North Durham) (Lab)]

There is also some evidence that the condition is hereditary, so testing family members of a diagnosed coeliac is an obvious way to identify such individuals. If doctors diagnose somebody as coeliac, would my hon. Friend suggest that other family members should also be tested?

[Gordon Banks]

I do and I will. I shall come on to that later. My hon. Friend is perfectly right.

Moving back to the QOF, approaches for groupings of gastroenterological conditions are being made. Those are important because coeliac disease is four times more prevalent among patients with clinical presentation of IBS, as in my case, than among the non-IBS population. There is also a NICE guideline that recommends the screening of patients with type 1 diabetes, but we do not know whether that screening is taking place. Without more stringent ways to incentivise and measure, we will not know.

As my hon. Friend says, screening family members when coeliac disease is present in the family is also a key concern. He might be interested to know that prevalence rates increase from one in 100 to one in 10 when a first degree relative has the condition. GPs should be screening, but we know that that is not happening routinely. I know full well is has not happened in my family, but it should. Coeliac disease is also more prevalent in people with other auto-immune conditions such as type 1 diabetes, as I have mentioned, and auto-immune thyroid disease. Hence, antibody testing for family members where coeliac disease has been diagnosed and for patients with autoimmune conditions is recommended by the NICE coeliac recognition and assessment guideline.

The Minister will be glad to hear that improving diagnosis is only one part of the answer; we also need improvement in the management of the condition after diagnosis. There are established clinical guidelines from, among others, the British Society of Gastroenterology, the British Society of Paediatric Gastroenterology, Hepatology and Nutrition and the Primary Care Society for Gastroenterology, which recommend an annual review for patients with coeliac disease and, indeed, dermatitis herpetiformis. Although that has traditionally been undertaken in specialist clinics in secondary care—or, indeed, not undertaken at all—it is an activity increasingly seen as suitable for primary care. We know of locally enhanced services where practices provide a structured annual review, but there are not enough of them. We would like annual reviews to be put more firmly into place to ensure that patients are complying with the gluten-free diets and safeguarding against potential associated conditions.

The improving management in gastroenterology—IMAGE—project provides a model for the development of quality markers for chronic disease management including coeliac disease. The project has developed patient-centred quality criteria based on current guidelines and has already been a source of a range of published papers, but health inequality is also a key concern in this area. Research has shown that coeliac disease is twice as likely to be diagnosed for the least deprived quintile of socio-economic groups than for the most deprived; it is usually the other way around. There is more work to be done to understand those results, but the working hypothesis is that the disease is under-recognised in the most deprived socio-economic groupings as a result of the wide-ranging nature of symptoms and, indeed, access to health care.

Where do we go from here? The NICE guidelines on recognition and assessment of coeliac disease showed that the “no diagnosis” strategy is the least effective strategy because of the low quality of life of patients and the costs resulting from undiagnosed coeliac disease. In applying accepted NICE thresholds, any testing strategy was shown to be more cost-effective than no testing strategy, despite the costs of the tests. Work also indicates that serological testing for coeliac disease in patients with symptoms such as irritable bowel syndrome, as I mentioned earlier, is, indeed, cost-effective.

The new NHS reforms may provide some opportunities for people with coeliac disease and provide different ways for them to be catered for within the new framework. Perhaps the Minister can say whether coeliac will be considered for one of the 150 quality standards soon to be rolled out, so that we can see diagnosis rates start to improve.

As I have said, once diagnosed, the only way forward is to manage the condition through a gluten-free diet. Many people do that through relying on prescriptions as the foundation of their condition management. On prescriptions, as the NHS looks to drive costs down during the past 12 months, a number of PCTs have placed strict limits on what can be prescribed for patients with coeliac disease. Those cuts, which include a blanket removal of almost 200 products prescribed to patients in Surrey, East Sussex and Kent, appear to be a knee-jerk reaction to costs linked to gluten-free foods on prescription. At the same time, they potentially threaten the long-term health of people with coeliac disease.

Hon. Members may have seen that, in July, a story broke in the national press that gluten-free bread on prescription was costing the NHS in Wales £35 a loaf. The story came from misinterpreted data following a question posed in the Welsh Assembly. Similar anecdotal figures had been used earlier in the year by medicine management teams linked to the south-east strategic health authority. Although the figures given in the national media were incorrect, sadly the story missed the real point about some high administrative charges added to a very small number of products, which appear to be unjustified.