Coeliac Disease

Diane Abbott Excerpts

Wednesday 7th September 2011 Westminster Hall

[Ms Diane Abbott (Hackney North and Stoke Newington) (Lab)]

I apologise for being a few minutes late for the debate. I was speaking in the debate on Health and Social Care (Re-committed) Bill that is taking place in another part of the building.

I congratulate my hon. Friend the Member for Ochil and South Perthshire (Gordon Banks) on securing this important debate. It is always important when hon. Members with personal experience of an issue or condition take the opportunity to make the rest of us aware of that experience, as he has done.

As we have heard, Coeliac UK is doing excellent work, and one of the concerns that it has raised with parliamentarians is the challenge that people with coeliac disease face when eating in hospital. It says that hospital food is often restricted, and even unsafe. It receives many calls from members who have been in hospital, and have returned home malnourished and having suffered considerable weight loss. Sometimes friends and family have to provide gluten-free food. I hope that the Minister will tell us what action his Department is taking to ensure the availability of gluten-free food in hospitals throughout England and Wales.

Hon. Members will be aware that as well as securing today’s debate, my hon. Friend tabled an early-day motion in June 2010 to raise the issue of diagnosis rates. He has spoken very well on the matter this afternoon. In a parliamentary question, my hon. Friend the Member for Slough (Fiona Mactaggart) asked what information the NHS provides to people who are diagnosed with coeliac disease on managing their condition. The departmental response referred to a website with detailed information. The site also has information on how to ensure a gluten-free diet, with helpful examples of food to avoid. However, in the light of the large number of undiagnosed cases that we have heard about, I wonder whether the Minister has recently discussed the diagnosis and management of coeliac disease with representatives of the Royal colleges and other bodies representing medical professions.

My hon. Friend the Member for Aberdeen South (Dame Anne Begg) tabled an early-day motion early this year on issues relating to the hospitality industry, which we have heard more about this afternoon. What discussions, if any, has the Department held with the hospitability industry?

Outside Parliament a wide range of organisations, including Coeliac UK and the British Society of Gastroenterology, carry out excellent work on the condition. In particular, the British Society of Gastroenterology feels that an active case-finding strategy will increase the number of patients detected with coeliac disease. Does the Department have such a strategy at present?

Last year the British Society of Gastroenterology published its “Guidelines for the management of patients with coeliac disease”, in which it made a number of recommendations on what testing for coeliac disease should incorporate and how to best manage patients. Has the Department looked at those recommendations, and does it have a position on the management of patients with coeliac disease?

We have already touched on the excellent work of Coeliac UK and its ongoing campaigns such as the “Eating Out” campaign, which focuses on the food service sector, or the “Product” campaign mentioned earlier, which is about having a greater availability of gluten-free foods in supermarkets and on prescription. Of course, Coeliac UK is concerned that the medical profession has under-recognised coeliac disease so far. It is not routinely tested for, and Coeliac UK is campaigning to change that. We must build on the successes achieved, and I would be interested to hear how the Department plans to support the ongoing campaigns and the further work of Coeliac UK.

We have already heard about diagnosis, and the Minister will know that Coeliac UK has petitioned the Government to improve the rate of diagnosis of coeliac disease by including a target for GPs in the quality and outcomes framework. If a target on coeliac disease were to be included into that framework, GPs would have to deliver a better rate of diagnosis of the condition. That campaign has attracted nearly 9,000 signatures, and Coeliac UK is continuing with that and has made a new submission to the National Institute for Health and Clinical Excellence for such a target to be included. It would be helpful if the Minister updated us on the Government’s position on the issues raised in that petition.

Apart from early diagnosis and the management of coeliac disease, my hon. Friend the Member for Ochil and South Perthshire called this debate to discuss community-led pharmacy prescriptions. He has spoken effectively on that matter.

Moving on to the socio-economic impact of coeliac disease, we know that it is difficult to assess the overall burden of the disease owing to the absence of recorded information on diagnosis rates. There is a need for a central register of patients with coeliac disease, and I wonder whether the Minister will comment on that. We know that coeliac disease has an impact on both the individual and the community because of its high prevalence and the long-term complications arising from late diagnosis. The development of osteoporosis or bowel cancer has an impact not only on the individual affected but on the community and the health service. Even in the short term, the absence of diagnosis has a socio-economic impact. My hon. Friend said how shocked he was when his GP said, almost lightly, that he had missed two other cases of the disease that month. According to an independent study commissioned by Coeliac UK in 2006, just under half of people with coeliac disease who had been wrongly diagnosed believed that their job or career had suffered due to the condition prior to diagnosis.

As we have heard, Coeliac UK wants to see greater understanding and familiarity with the disease among GPs, and higher levels of referral to dieticians. A survey of registered dieticians conducted by Coeliac UK showed a wide variation nationally in the provision of dietetic expertise for patients with coeliac disease. Current provision is around one third of what it would be were we to provide diagnosed coeliacs in the UK with basic support and an annual review.

I will conclude my remarks by saying to the Minister that there is a continued cost to the health service due to repeat visits to GPs by people with undiagnosed coeliac disease—my hon. Friend referred to that in his personal case. Furthermore, left untreated or undiagnosed, coeliac disease can lead to more serious complications such as bowel cancer, which puts an even bigger drain on health service resources. Coeliac UK recognises the competing demands on health service resources and budgets, but coeliac disease is easily controllable once diagnosed—we can see that by looking at my two hon. Friends the Members for Ochil and South Perthshire and for North Durham (Mr Jones), who are able to be excellent and inspirational Members of Parliament because their coeliac disease is so well managed. It is a disease that can be self-managed if diagnosed early enough in life.

Government policy needs to acknowledge the scale of the impact of coeliac disease across a large segment of the population. Policy must also take into account the potentially serious nature of the disease, the cost in financial terms, and the suffering of the undiagnosed. In particular, measures should be taken to address the lack of awareness about the disease and provide a framework to ensure that GPs receive appropriate training and resources. Ongoing training should be provided to enable GPs to give better care in the community.

Once again, I congratulate my hon. Friend the Member for Ochil and South Perthshire on securing this debate, and my hon. Friend the Member for North Durham on chairing the all-party group on coeliac disease and dermatitis herpetiformis. A number of colleagues from all sides of the House take a keen interest in this issue and wish to commend the work of the all-party group in promoting awareness about the disease. I look forward to the Minister’s response.