Crohn’s and Colitis Treatment: England

Chris Evans Excerpts

Wednesday 24th February 2016 Westminster Hall

[Chris Evans (Islwyn) (Lab/Co-op)]

It is a pleasure to serve under your chairmanship today, Sir Roger.

I, too, congratulate the hon. Member for St Albans (Mrs Main) on her outstanding speech and on bringing this important topic to the fore. I am delighted that we have had so many contributors today. I remember that when I held a debate in 2012 on employment opportunities for those with Crohn’s and colitis, I was the only speaker who was responded to by the Minister. I am glad that this issue has moved up the agenda somewhat since then.

Those with Crohn’s and colitis are often mixed up with those with irritable bowel syndrome—in fact, I admit that when I first heard of Crohn’s and colitis, I thought they were the same thing. I did not realise how debilitating and disabling they were, and how many people suffered in silence, and I really believed that it was time to shine a light on those things.

A recent Crohn’s and Colitis UK survey of pre-employed young people with inflammatory bowel disease showed that the prospect of gaining their first job was regarded as a daunting challenge. Employability emerged as their overriding concern, and when they found themselves in work, they found that they were often too embarrassed or scared to tell their employers about their needs. When I secured that debate—four years ago, nearly—I said that all we were calling for from employers was some understanding and some respect. However, with the welfare reform changes that lay ahead, I was deeply concerned that that was not going to be the case. That is why I am disappointed that the report found that 69% of the young people interviewed felt that their IBD had prevented them not only from reaching their full educational potential, but from having any chance of employment, with over half ruling out some sort of career option.

Back in January 2014, I took on an intern for three months who has Crohn’s disease. She completed her internship and I was very impressed by her work. There was an opening in my office and I offered her a job as my parliamentary research assistant, and she has been with me ever since—although I will say that in some parts of this speech she has written “irritable bowel disease” rather than “inflammatory bowel disease”, even though she herself suffers from the condition, but I will forgive her that. I was keen to take part in the internship programme, as I valued the idea of giving a younger member of the public an incredible career experience, while also teaching politicians such as myself about inflammatory bowel disease—she has written “irritable bowel disease” again, Sir Roger.

In January 2015, I hosted the parliamentary launch of the Work Foundation’s report on IBD and employment, alongside Crohn’s and Colitis UK—I am delighted they are here today, as the hon. Member for St Albans mentioned. In the UK, at least 300,000 people, or one in 210 people, have Crohn’s disease or ulcerative colitis, which are both known as inflammatory bowel disease. That equates to roughly around 460 people in each parliamentary constituency across the UK. These are incurable and relapsing chronic long-term conditions. The symptoms can be present at any age, but most commonly in the teens and twenties.

People with IBD are high users of health services, with 50% of patients with Crohn’s disease requiring surgery during their lifetime. I know this first hand, as my parliamentary researcher, who has Crohn’s disease, as I have mentioned, has had four operations in the two years she has been working in my office. In saying that, I pay tribute to Laura for her bravery, because, for something as private and embarrassing as some of the symptoms she has suffered from, she has not been afraid to bring that to the fore. We need more people like her, not only in politics but throughout working life.

Medical treatment will often include corticosteroids and immunosuppressants, including the biological therapies that are the latest treatments offered for inflammatory bowel disease. These conditions can have a devastating and life-stopping impact on a person’s life, due to the unpredictable nature of flare-ups, together with sleep deprivation, pain and fatigue, and they can severely affect an individual’s self-esteem.

There appears to be a low level of awareness of inflammatory bowel disease among the public, policy makers and clinicians. Public awareness of IBD is lower than it is for Parkinson’s and multiple sclerosis, as the hon. Member for St Albans mentioned, despite more people being affected by IBD than by both these conditions combined. The lack of public awareness is exacerbated by the stigma attached to the symptoms of IBD and the fact that it is a hidden illness.

Four years ago, I called for some understanding from employers. With debates such as this and events we have had in Parliament, I hope that understanding can come to the fore. If there is a message that should emerge from today’s debate from sufferers of IBD such as my hon. Friend the Member for Great Grimsby (Melanie Onn) and my parliamentary researcher, it is that there is no point in hiding IBD away. If someone is suffering, they should ask their employer for help. Most people I meet—I was a trade union official—are understanding. I have tried to be an understanding employer myself. Once people overcome that barrier, they will find that they can have a working life that is fruitful and that can lead to some great opportunities.

I had wanted to say more, Sir Roger, but I understand that there is a time limit. However, I will say this to anybody who suffers from Crohn’s or colitis: please do not hide away. If you are suffering, then speak to your employer. Speak to your teacher. Tell them what you are suffering from and they will be understanding. I genuinely believe that Crohn’s and colitis is as much of a problem for this country as dementia, whereas it is not mentioned because it is embarrassing—it is not something that we talk about. Crohn’s should be pushed up the political agenda, and I hope that with today’s debate we will do that.