Crohn’s and Colitis Treatment: England

Anne Main Excerpts

Wednesday 24th February 2016 Westminster Hall

[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 IBD, 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 partners and closest 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—]