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.

Oral Answers to Questions

Chris Evans Excerpts

Tuesday 22nd November 2011 Commons Chamber

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

Is not there a danger that health and wellbeing boards will simply be a talking shop for bureaucrats?

[Paul Burstow]

No.

Contaminated Blood and Blood Products

Chris Evans Excerpts

Thursday 14th October 2010 Commons Chamber

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

I have been sitting here waiting to speak for an hour or two. Those affected by the tragedy of contaminated blood and blood products have been waiting for justice for more than 25 years.

I do not have to tell anyone that living with haemophilia is hard. My own cousin was affected by the condition, and when I think of him now I always think of him with a smile on his face. He was always cheerful. As a child, I was always aware that he had haemophilia, although I did not understand what the condition meant. Having done some background reading and spoken to people, I can say this about him now: my admiration for him, my aunt and my uncle has only grown.

Like many Members, I was motivated to speak in the debate by a number of constituents who have haemophilia and have contacted me with their stories, which I found both moving and inspiring. One e-mail particularly struck a chord with me, and I spoke to the man who wrote it on the phone this morning. Wayne Gambin is 35 years old and has a young family, and he has haemophilia. He was given hepatitis C through a bad blood transfusion. I read about how he gets depressed a lot of the time just thinking about death, which is in the forefront of his mind most of the time. He wonders whether the disease could kick in, causing liver failure and eventually death.

Over the years, Wayne has tried two different experimental drug combinations, but they have had no effect on the disease. While on the trials he suffered a lot of side effects, such as depression and anger. During one trial three years ago, he lost his job and his house. He has a young family and cannot get life insurance because of the excessive charges, even though he contracted the disease through no fault of his own. He worries about dying and leaving his family destitute. To me, that is a scandal in itself.

Another constituent who also wrote to me is in his mid-40s and has three children, and was infected with hepatitis C in the ’80s following an accident that required surgery. He discovered he had the disease shortly before his 40th birthday and his health deteriorated dramatically, culminating in a liver transplant a year ago. His children now face the prospect of not having their father around in future. He has lost everything, even though he has worked his entire life.

I know that when we read stories such as that, it is easy to be carried away with the emotion of it all, but we can deal only in fact. Throughout the ’70s and the first half the ’80s, many in the UK who suffered from haemophilia were treated with blood and blood products that carried what came to be known as hepatitis C. As has been said, some 4,670 patients became infected. Between 1983 and the early 1990s, some 1,200 patients were infected with HIV through blood products. We know that because Lord Archer held an independent public inquiry.

The Macfarlane Trust was established in 1987 to provide emergency funding for haemophilia patients infected with HIV, most of whom were not expected to live more than five years. Victims, many of whom had a good standard of living beforehand, were required to go cap in hand for discretionary relief. Monthly payments are now dispensed. The Skipton Fund was founded in 2003 following the publication of the Ross report. Those infected with hepatitis C can claim a lump sum of £20,000, and a further £25,000 is paid to those who can establish that their hepatitis C led to severe liver disease.

I have no doubt that those were welcome developments, but like many other Members I believe that more needs to be done. As many have mentioned, Lord Archer’s conclusion, which has caused some controversy, was that payments should be at least equivalent to those payable under the Irish scheme, which is far more generous than ours. I hope that the Irish made that settlement because caring for the victims of the disaster was morally the right thing to do.

I agree with my hon. Friend the Member for Liverpool, Walton (Steve Rotheram) that the annual payments awarded to all patients infected with hepatitis C and HIV through contaminated blood are too low. Considering the damage done to the lives of those infected and their families, they should be increased. Yes, there needs to be some reconciliation, and I welcome the Government’s move to review the recommendations of the Archer report, but I hope that they will go further and offer an apology, which costs absolutely nothing.

One of my constituents wrote to me to say that it is time to bring about an end to this fight and to allow those who remain to live out the rest of their lives with some peace of mind. I wholeheartedly agree with him.