Anne Main leads Crohn’s and colitis debate
Anne Main leads a debate on Crohn’s and colitis and calls on the Government to do more to raise awareness and improve diagnosis, research and access to treatment.
Mrs Anne Main (St Albans) (Con): I beg to move,
That this House has considered the treatment of people with Crohn’s and colitis in England.
It is a delight to serve under your chairmanship, Sir Roger. I am aware that there are different treatments in Scotland and Wales, but I want to focus on Crohn’s disease and colitis in England.
I am pleased to be leading this very important debate on Crohn’s and colitis, which affect more than 250,000 people in England and 300,000 in the UK. I have been working with the charity Crohn’s and Colitis UK, some of whose members are here today. They would be delighted to meet any hon. Members participating in the debate because they would like to get some publicity for that particularly wonderful charity, which is based in my constituency in St Albans. It does a tremendous amount of work for those who live with these challenging conditions.
I am also pleased to say that I have been reading the feedback from the digital debate on Facebook. That is a new concept, and I am very pleased that the House is offering it. I wish to express my thanks to Crohn’s and Colitis UK and the Westminster Hall digital debate team for arranging the online forum. We received 1,068 comments on the forum, and the posts were shared 258 times and liked 734 times, so it has been highly informative to this debate.
Crohn’s disease and ulcerative colitis are the two main forms of inflammatory bowel disease. Both are chronic lifelong conditions that cause inflammation of the digestive system. Ulcerative colitis affects only the large intestine, whereas Crohn’s disease affects the whole digestive system. According to the National Institute for Health and Care Excellence, it is estimated that in the UK 115,000 people have Crohn’s disease and 146,000 have ulcerative colitis. That is an estimated 460 people per constituency. I keep using the word “estimated” because there is no national database. At my last meeting with the charity, it stressed that it would very much like there to be a national database and better record keeping on those people who are presenting with the disease.
The most common symptoms of inflammatory bowel disease include diarrhoea, cramping pains in the abdomen, tiredness and fatigue, and loss of appetite and loss of weight. The exact causes of Crohn’s disease and ulcerative colitis are unclear, but there is evidence that IBD can cluster in families, and having an affected family member is a risk factor. IBD is a lifelong condition, but people can get it at any age. It most commonly first presents in the teenage years and early twenties—the mean age of diagnosis is 29.5 years. About 18,000 new cases of IBD are diagnosed each year, and that number is increasing. This is not a trivial complaint. IBD can be painful, disrupt normal activities and reduce quality of life, particularly during periods of active disease. These conditions can affect the individual’s ability to work, learn, socialise and form and maintain relationships.
We British are famous for our lavatorial sense of humour, and just saying the word “bottom” or “bum” is usually enough to bring on a fit of the giggles, so it is no surprise that we, the British public, are not good at discussing bowel problems or even seeking help for them—no wonder IBD has been described as a hidden disease. That reluctance can lead to sufferers feeling isolated and stigmatised.
According to Crohn’s and Colitis UK, the causes of IBD are a combination of factors. Those include the genes that a person has inherited, together with an abnormal reaction of the immune system to certain bacteria in the intestines, probably triggered by something in the environment. Viruses, bacteria, diet, smoking and stress have all been suggested as environmental triggers, but there is no definitive evidence that any one of those is the cause of IBD. That is why, as I know the charity would also say, we need more research and more evidence. We need IBD to have a higher profile, as it affects so many of our constituents.
There is currently no cure for Crohn’s or colitis. The main aim of treating IBDs is either to heal the inflammation and so reduce symptoms during a flare-up or to prevent flare-ups from happening. NICE has recommended a number of different medicines for IBD, which can be taken in different ways by patients, but if individuals do not respond to medication, surgery is considered as an option—20% of people with ulcerative colitis and about 60% to 70% of people with Crohn’s disease go on to have surgery. A large number of our constituents will be forced to have surgery as a result of the disease. The lifetime medical costs for IBD are comparable to those for other major diseases such as diabetes and cancer. It is estimated to cost £900 million per annum, UK-wide. Crohn’s and Colitis UK currently funds about £500,000-worth of research every year into the causes of, and treatments and care for, people with IBD. Although that sounds like a large amount of money, in terms of the number of sufferers it is not a large amount.
There is a new research study under way from the National Institute for Health Research, called the IBD BioResource. The aim is to accelerate research into Crohn’s disease and ulcerative colitis and build on recent major advances in the understanding of the genetic basis of these conditions. The IBD BioResource is being launched for roll-out nationwide through 2016. I ask my hon. Friend the Minister how much support the Government are giving to the IBD BioResource study.
Crohn’s and Colitis UK says that there is a low level of awareness of IBD among the public, policy makers and even clinicians. It says:
“Public awareness of IBD is lower than for Parkinson’s and MS”—
multiple sclerosis—
“respectively, despite more people being affected by IBD than both diseases combined.”
Most of us will be very familiar with those two diseases.
At this point, I want to include some of the comments from the digital debate on Facebook. One contributor said:
“I’ve had Crohn’s for 18 years. For me it’s pain, fatigue and always having to explain to people what’s wrong with me and why I can’t come to work or do things.”
Another referred to:
“The Stigma of having a bowel disease. People not believing you and belittling how you feel because they can’t see it.”
Another said that we need:
“To raise more awareness of the illness! Make people more aware of what we go through on a day to day basis!”
Another talked about:
“Having to try, and try, and TRY to make people realise that it’s a disability and that just because you ‘don’t look ill’ (in a wheelchair) you still have issues that they will never understand.”
Many made the point that the illness controls and disrupts their lives to such an extent that they are in fact disabled by it. It is a hidden disability, and many call for it to be recognised as a disability. Therefore my question for the Minister is this: what are the Government doing to increase awareness of inflammatory bowel disease, and what are they doing to measure accurately the number of people living with IBD in England?
The charity tells me that early diagnosis of Crohn’s and colitis can prevent emergency hospital admissions, which have a cost to the NHS, and can help to avoid clinical complications. Unfortunately, in a substantial number of cases, that is simply not happening. Studies have shown that 35% of people with Crohn’s and 16% of people with colitis had three or more emergency admissions before they received their diagnosis.
In the digital debate on Facebook, a sufferer said:
“I was treated for 6 months by my GP for food poisoning and/or anorexia before eventually ending up hospitalised as an emergency. The hospital did biopsies that day and confirmed Crohn’s. My Crohn’s turned out to be particularly aggressive and unresponsive to treatment and numerous surgeries.”
Another said:
“GPs need to be more up to date with IBD and stop saying it’s just a virus or IBS”—
irritable bowel syndrome. They continued:
“It took quite a few years of pain and complaining before I was diagnosed with Ulcerative Colitis.”
There is clear guidance from NICE on referral. The NICE quality standard for IBD states that people who have been experiencing abdominal pain or discomfort, bloating or a change in bowel habits, such as diarrhoea, with or without rectal bleeding, for at least six weeks should be suspected of having IBD. However, the feedback is clear that for many that is currently not happening and the guidance is not being followed.
NICE recommended faecal calprotectin testing as an option to help doctors to distinguish between inflammatory bowel diseases, such as Crohn’s and colitis, and non-inflammatory bowel diseases, such as IBS. That testing should enable quicker identification of suspected IBD and referral to a specialist, and reduce the number of unnecessary endoscopies carried out. Therefore more effective use of faecal calprotectin testing in primary care should enable quicker and more economical diagnosis of IBD patients, ensuring better and more efficient care in England.
What steps will the Minister take to improve the identification of suspected IBD? What are the Government doing to increase awareness of IBD in general practice among GPs? What steps will she take to improve the rate of referral of people with suspected IBD from primary care to the experts in secondary care? Will the Department undertake an evaluation of the uptake of faecal calprotectin testing by clinical commissioning groups, which NICE recommends, and the time taken by labs to process the results?
The IBD standards have been widely recognised throughout the IBD community, and later rounds of the IBD audit have benchmarked IBD services directly against them, but there is still a lot to do. Some 14% of services are still unable to provide people with Crohn’s or colitis with access to an IBD specialist nurse. Many of us would think of having access to a Parkinson’s specialist nurse, but IBD specialist nurses are few and far between, and many that have them struggle to maintain that vital service. Nearly one in four—23%—of all services have no access to specialist nutritional support despite the high level of malnutrition experienced by people suffering with IBD. Only 12% of services have a clear process to enable people with IBD to see a psychologist or a counsellor with a particular knowledge of IBD, and IBD has been described on many occasions as being a traumatising disease that leaves many people feeling isolated and unable to discuss with anyone—sometimes even their closest partners and friends—the reasons why they are often ill.
Sufferers complained online of a postcode lottery with IBD nurses. The lack of nurses was cited by many, who also said that GPs needed more training to identify people with Crohn’s and to assist in providing faster referrals or appointments when treatments need adjusting. Some sufferers found that their GP even seemed reluctant to make those referrals. Many sufferers said that employers need to have a greater awareness of the impact of IBD on their employees, especially given that flare-ups can occur at any time.
What is the Department doing to ensure the implementation of the IBD standards in England, and can the Minister give assurances to those living with IBD that they will not be forgotten on a strategic level by the NHS? What action is the Department taking to ensure that the NICE quality standard for IBD disease is being implemented across England? For those living with IBD, debilitating symptoms such as diarrhoea can occur instantly and unpredictably. Crohn’s and Colitis UK has been championing quick access to suitable toilet facilities. I hope the Minister will encourage all local authorities to evaluate the public toilet provision in their locality.
Christina Rees (Neath) (Lab): Increasing access to toilets away from home is of benefit to all groups in society but it is especially crucial for those living with Crohn’s and ulcerative colitis, who have concerns about not reaching a toilet in time. Does the hon. Lady believe that other nations in the UK can learn from Welsh Labour’s Public Health (Wales) Bill, which treats access to toilets as a public health issue?
Mrs Main: It certainly is a public health issue. In the first Parliament I was in, from 2005 to 2010, I was on the Select Committee on Communities and Local Government and we looked into the issue of toilet access. I do not think that much has improved since then and that was under a Labour Government. I am sorry to say that we have not made a lot of progress. At the time, ordinary businesses were showing and displaying signs reading, “We welcome people using our public facilities.” The evidence that came out of that Communities and Local Government Committee report was that toilet provision was not just needed for people with things such as Crohn’s and colitis—there was a vast spectrum of other conditions for which people would welcome toilet provision, but that is for another debate.
It is very obvious that more focus on the cure and cause of IBD is urgently needed. I hope the Minister will give sufferers of this debilitating disease a cause for hope and a better future. I look forward to her answers—I hope she can give them today—to a large number of the questions that I have raised on behalf of those who have responded to the online debate and on behalf of the charity Crohn’s and Colitis UK, which is doing such a lot of good work. Look for the purple badge.
Several hon. Members rose—
Sir Roger Gale (in the Chair): Order. I think four Members wish to speak. I will not put a formal time limit on speeches but request that Members confine their remarks to about six minutes. If we are sensible, everybody should get a chance to speak.
4.44 pm
Minister's Reply
The Parliamentary Under-Secretary of State for Health (Jane Ellison): It is a pleasure to respond to this debate under your chairmanship, Sir Roger. We have had a good debate with many first-class contributions. I hope it demonstrates to those watching and those who participated in such great numbers in the Facebook debate that Parliament is taking this issue seriously as we have filled the time available to us with various contributions. I hope to be able to respond to most of the points made. If not, as ever, I will try to respond post debate.
I congratulate my hon. Friend the Member for St Albans (Mrs Main) on securing the debate. It is always interesting for a Member of Parliament with a great charity in the constituency; the MP ends up becoming quite expert, and my hon. Friend has done an excellent charity proud this afternoon in raising the issues. Crohn’s and Colitis UK is the national charity campaigning on these issues. I pay tribute to its work as it campaigns tirelessly to raise the profile of Crohn’s and colitis and to provide support and advice to all those affected. My hon. Friend is a keen supporter of its work.
I will not spend time describing the diseases themselves or the number of people affected, because others have eloquently done so. Instead I will talk about some of the ways in which we are responding. A great many of our fellow citizens are affected, so it is right that we have this debate today.
Some hon. Members raised the issue of GPs, diagnosis and training. Digestive health features both as part of the undergraduate medical curriculum and GP specialty training. For GPs the required competencies include understanding the epidemiology of digestive problems as they present in primary care; how to interpret common symptoms in general practice; and how to demonstrate a systematic approach to investigating digestive symptoms such as IBD. IBD also features in the content guide for the Royal College of General Practitioners applied knowledge test, a key part of the assessment of trainee GPs, which must be passed in order to qualify.
As others have said, diagnosing the symptoms of IBD can be challenging for a GP. Even though the numbers are quite large, as we have heard, if we divide the numbers by GP practice across the country, it might be the case that some GPs are not seeing people very often. The variety of symptoms and the range of their severity differ from patient to patient. Problems may also arise owing to the fact that the symptoms of IBD, such as abdominal pain and weight loss, are shared with other more common, less serious conditions, such as IBS, which is estimated to affect 12 million people in the UK, as opposed to IBD, which affects around 300,000. However, as others have said, a misdiagnosis or a delayed diagnosis can lead to a range of further complications for IBD suffers, so it is important that clinicians have the tools and resources to help them to identify symptoms when a patient presents.
In addition to their clinical training and experience, a number of tools and resources are now available to clinicians to help them to diagnose and manage IBD. The “Map of Medicine” is an excellent free online evidence-based guide and clinical decision support tool, which is available to GPs and other healthcare professionals working in the NHS. It has published diagnosis and treatment maps for patients with IBD. The map supports GPs on issues such as differential diagnosis and helps them to identify “red flag” IBD symptoms and provide advice on appropriate diagnostics and referrals. NICE has produced a clinical guideline specifically to support clinicians in using faecal calprotectin testing to help doctors to distinguish between IBD and less serious conditions as it highlights inflammation specifically.
NICE’s role in setting standards in the diagnosis and management of a range of diseases is well known, and IBD is no exception in that regard. NICE published best-practice clinical guidelines on the management of Crohn’s and colitis in 2012 and 2013 respectively. Once diagnosed, a number of treatment options are available for patients. The Scottish National party spokesperson, the hon. Member for Central Ayrshire (Dr Whitford), outlined some of the related challenges and some of the treatments in which she has participated. When treating IBD, the aim is either to heal the inflammation and so reduce the symptoms during a flare-up, which is known as inducing remission, or to prevent flare-ups from happening in future, which is known as maintaining remission.
The routine monitoring and follow-up of patients is a key feature of the guidance on the management of Crohn’s disease and ulcerative colitis. It ensures that patients can access specialist care when flare-ups or relapses occur. Protocols for monitoring should be agreed locally. Various drugs are recommended by NICE and funded by the NHS, and they can help with both of those aims. Although there is currently no cure for IBD, we know that some treatments can ease symptoms and improve quality of life—we heard Members talk about a particular member of staff and bring quality-of-life issues to the fore in their speeches. Management options include drug therapy, dietary and lifestyle advice and, in severe or chronic active disease, surgery.
I turn briefly to prescriptions. In addition to medical exemption, there are extensive exemption arrangements in England, based on age and income, via various means- tested benefits. For people who need multiple prescriptions and have to pay NHS prescription charges, such as those with long-term conditions, prescription prepayment certificates are also available, and it is worth highlighting that. I take the point about the challenge of prescriptions, but not everyone is aware of PPCs. This is the fifth year that the cost of an annual certificate has been frozen, and the third year that the cost of a three-month certificate has been frozen. Next year, both certificates will remain at £104 and £29.10 respectively. There is no limit to the number of items that can be obtained through a PPC. The annual certificate benefits anyone needing more than 12 items a year and the three-month certificate benefits anyone needing more than three items in that three-month period.
The IBD quality standard was mentioned. In general, quality standards are important in order to set out to patients, the public, commissioners and providers what a high-quality service should look like. NICE issues them, and they enable services to benchmark themselves against one another. The quality standard for IBD was published in February 2015 and contained priority statements covering important areas such as specialist assessment, drug monitoring and surgery, all of which is designed to drive improvements in IBD care. Although providers and commissioners must have regard to the quality standards in planning and delivering services, the standards themselves do not provide a comprehensive service specification and are not mandatory.
The six inflammatory bowel disease standards were published in 2013 by the IBD Standards Group, an independent organisation made up of a number of professional clinical organisations and the charity itself. The standards were designed to support clinicians and commissioning organisations in the development of local IBD services. If appropriate, they may be considered alongside sources of guidance such as the NICE guidelines.
A number of important issues have been raised in the debate that are very much matters for NHS England to look into. I am sure it will be really interested to hear about the challenges that have been raised in the debate, as well as about the Scottish strategy. As the shadow Minister said, the consideration of best practice throughout the United Kingdom is often common, as are many research outcomes, not only throughout the United Kingdom but internationally.
Some Members mentioned the importance of nurse specialists. It was lovely to hear the hon. Member for Great Grimsby (Melanie Onn) pay tribute to the specialists with whom she has dealt and the standard of care and support she has experienced. Obviously the recruitment of staff is ultimately a local matter but, again, the NICE guidance states that local services should ensure that patients with Crohn’s or ulcerative colitis have support from an IBD multidisciplinary team, which should comprise a range of experts, including dieticians, who were mentioned, and clinical nurse specialists with particular expertise and specialist interest. That MDT care is a key feature of the quality standard, which sets out what great-quality care looks like.
The shadow Minister mentioned mental health support. It is worth noting for the record that we invested more than £400 million over the previous spending review period in improving access to psychological therapies—the IAPT programme—to ensure access to talking therapies for those who need them. That includes people with long- term conditions who are suffering from anxiety and depression. Recent positive announcements include the Prime Minister announcing £1 billion to start a revolution in mental health, which is a shared interest right across the House. No one has done enough on mental health in the past, and the matter is now much more front and centre in our thoughts. As part of that announcement, £247 million has been allocated to ensure that every emergency department has mental health support. That money reaffirms the Government’s commitment to parity of esteem between mental and physical health.
Several Members quite rightly asked about toilets. As others have said, it is essentially a matter for my colleagues in the Department for Communities and Local Government, but I will of course draw their attention to this debate. Local authorities in England are forecast to spend just over £60 million on such services in 2015-16. It is also worth noting that more than 400 local authorities and thousands of businesses have joined the national RADAR key scheme, meaning that some 9,000 toilets in shopping centres, pubs, cafés, department stores, bus and train stations and many other locations are now listed as being accessible through the scheme. I am sure that we have all seen them in our local areas. Official RADAR keys cost about £5 and can be bought from participating local authorities or Disability Rights UK shops. While noting that initiative, we must recognise that there is always more to do in that regard.
Members quite rightly drew the House’s attention to research and the need to know more. Dealing with a disease that currently has no cure is a big challenge, and research is key. The Department of Health currently spends more than £1 billion a year on research. As for IBD, the Department’s National Institute for Health Research awarded a £1.5 million research professorship for five years from 2013 to 2018 at the University of Oxford to examine the use of molecular techniques to re-stratify Crohn’s disease, aiming to get into the detail of identifying patients amenable to new treatment approaches and to develop new therapies. The NIHR is also investing just under £1 million in a study comparing the accuracy of MRI imaging and small bowel ultrasound in assessing the extent and activity of newly diagnosed and relapsed Crohn’s disease. The final report from the study is expected to be published in September 2017, and I am sure that there will be interest in that among Members.
My hon. Friend the Member for St Albans also mentioned the IBD BioResource. It is a really exciting project that brings together the Medical Research Council and the NIHR, supporting groundbreaking studies looking at the genetics of and new treatments for IBD that have the potential to make a real difference to patients’ lives. It will undertake a major new genetic analysis based on genome sequencing, and it will keep a database of 25,000 patients with IBD.
I have tried to cover most of the points raised in the debate. I hope that I have given hon. Members a sense of the Government’s ambition to make progress on research. I again pay tribute to the charity for contributing to the research. Partnerships between Government bodies, medical research bodies and specialist charities are an important part of making progress, not least because recruiting people to studies is important, and we cannot do that without the work of the charities.
I will write to Professor Sir Bruce Keogh, the medical director of NHS England, to outline the concerns that hon. Members raised today and to ensure that he is aware of Parliament’s interest in this issue and of the challenge to the NHS that has been outlined today. I urge Crohn’s and Colitis UK, as I do all relevant stakeholders, to continue to engage with NHS England to build valuable long-term relationships. I will write to the Royal College of General Practitioners, as a number of the issues that were raised relate to it. I once again thank my hon. Friend the Member for St Albans for securing today’s debate and for making such a meaningful contribution to raising awareness of this very important issue.
5.41 pm
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