Inflammatory Bowel Disease

Debate between Andrew Percy and Chris Evans

Tuesday 31st January 2012 Westminster Hall

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

Thank you for calling me to speak, Mr Leigh.

I called for this debate to draw attention to the crippling effects of one of the country’s most common health conditions and the problems that people living with it face in their working lives. I will be honest: before securing this debate, I knew very little about inflammatory bowel disease. I knew the bare facts, but I did not know the impact that IBD has on sufferers in their daily lives. For example, I did not know that there are more people with IBD than people with multiple sclerosis and Parkinson’s disease. However, if we asked the person on the street about either of those two terrible conditions, I am sure that they would know at least the barest details. By contrast, if we mentioned IBD to someone, it is quite possible that there would be some confused looks and silence. Indeed, when I mentioned this debate to people over the weekend, I had to explain what it was about.

Perhaps the problem comes down to the fact that many of those who live with IBD are often too embarrassed by the symptoms or are afraid to speak out about what they have to go through daily. Living with IBD is particularly difficult as the condition is known to fluctuate and can flare up at any time without warning. What is more, unlike the impact of many debilitating illnesses, the impact of IBD is not always obvious to other people, making it difficult for them to understand what a sufferer is going through.

The problem is particularly acute in the work environment, as someone who is suffering from IBD can find it difficult to tell their employer what is wrong with them. In a survey by Crohn’s and Colitis UK, 78% of people with IBD said they worry about their ability to manage their symptoms in the workplace. In addition, 62% said they worry about not being able to carry out their responsibilities adequately and 36% said they fear losing their job as a result of their condition.

Those of us with a long commute may worry or moan about traffic on the roads or finding a seat on a train, but few of us have to worry about where the nearest toilet is, which really is the difference between being in or out of work for someone with IBD.

Those fears are particularly prevalent among young people with IBD who are about to enter the workplace for the first time. When young people with IBD were asked about their condition, 56% of them said that their condition causes them to rule out some career options that they might otherwise have considered.

[Andrew Percy (Brigg and Goole) (Con)]

I am sorry for not giving the hon. Gentleman notice that I wanted to speak; I had not realised that he had secured this debate. I just want to emphasise the point that he is making. My mother suffers from Crohn’s disease and has twice had operations to remove part of her bowel. On both occasions, she nearly died. I have seen her symptoms daily and growing up as a kid I actually saw her cry because she was unable to get to a public toilet after being refused the use of a toilet—a private toilet—in a shop. This condition really impacts on people’s lives. It changes the whole way in which they have to live and work, and sadly a lot of workplaces are not set up at all for people who have it.

[Chris Evans]

I agree completely with the hon. Gentleman, and I will develop that point about workplaces further as I go through my speech. I am glad that he has raised it. Very often in this place, we quote statistics and sometimes we use them to bash the Government, but in the middle of all those statistics there are real human tragedies and stories that are taking place. As I have said, I am glad that the hon. Gentleman raised that point and I hope that his mother is dealing with life a bit better now.

I want to return to the point that I was making about young people with IBD. At a time when more and more of our young people are struggling to find work, the last thing that we need is for them to rule out career options. Since becoming involved in the campaign to raise awareness of IBD, I have heard story after story from young people who are unable to fulfil their potential because of the problems that the condition causes. This story is particularly common:

“Leanne is a full time foundation degree student from Crewe and has a part time job in a local pub. As a 19 year old she finds it especially hard having an illness which isn’t highly understood or visible. Having a condition which includes side effects like fatigue means not all employers or educational institutions understand the challenges she faces, and she even says that most people mistake this fatigue for laziness. She has had bad experiences in the past with employers and teachers who do not fully understand her condition and what it can mean on a daily basis. She describes herself as a passionate individual who wants to commit to jobs and her education, but finds it difficult on bad days. She has in the past been called “unreliable” during a flare-up of her illness. This ignorance can be damaging and can have a lasting effect on someone so young.”

--- Later in debate ---

[Chris Evans]

I remember the hon. Gentleman in his previous life as a Welsh Assembly Member, and I also remember the good work that he did to raise awareness about this issue. I hope that more people follow his example and raise awareness of what is a really serious situation.

Returning to my example, when they graduate, people such as James may be too embarrassed to ask for help from careers advisers or Jobcentre Plus staff, who are already feeling the strain caused by the sheer volume of people whom they are trying to get back into work.

Some people do not even make it to university due to the challenges that they face in their teenage years from IBD. Here is an example of such a person:

“Because of immune suppressants which I take to manage my IBD, I have a very low immune system and become very ill, very quickly. I have already missed one year and I have had to re-sit my A levels. I feel a complete failure. I wanted to become an architect but I just cannot keep up with my studies. I feel I have let myself and my family down and my career is only just supposed to be starting.”

There are endless stories of young people with IBD who are worried and concerned about their future. A diagnosis of IBD should not mean that a person has to restrict their ambitions, whatever those ambitions are. The prospect of starting work is particularly daunting for anybody leaving school or university, but it is made even harder for those who are simultaneously coming to terms with a long-term health condition.

Many employers lack knowledge of IBD, which complicates the problem further. A study undertaken by Crohn’s and Colitis UK found that two thirds of employers admitted to knowing very little or nothing at all about the needs of employees with IBD. When asked to name some of the symptoms of IBD, most were unable to name any, while others displayed a misunderstanding of the condition. One even attributed IBD to a lack of “work passion”. That could not be further from the truth, as we see from the example of the hon. Member for Montgomeryshire (Glyn Davies). Half of people with the condition revealed that they feel they need to put in additional effort to compensate for the time they take off for hospital or doctor’s appointments.

There are steps that employers can take to provide extra support for employees who suffer with IBD. There are simple adjustments, such as allowing an employee with IBD to visit the toilet when needed and, if possible, sit near a bathroom. That can help an IBD sufferer stay in employment and not feel awkward about the condition when they are in work. Some 65% of people with IBD believe that the opportunity to work flexible hours could maximise their productivity.

I do not want anyone to think that young people are the only group to be affected by the condition, as we have seen with examples today.

[Andrew Percy]

On the issue of work ability, there needs to be an acceptance not only that sufferers need to use the toilet, but that a lot of people rely on vitamin B12 injections. As one gets nearer the time for the injection, energy levels drop. Employers need to recognise that there could well be a change in work patterns as the time for the injection approaches.

[Chris Evans]

That was the point that I was trying to make. All we are looking for is a little understanding from employers. We are not asking for a great change in legislation. We want them to foster an environment where people do not feel embarrassed about going to their employers about their condition and that, when they do have to take medication, they are allowed time to do so. That will not affect anyone’s productivity; if anything, it will improve it.

As I have said, I do not want anyone to think that only young people face this problem. Some are forced to take early retirement due to the unpredictable nature of their disease. Until last year, John was a university lecturer. He found that working and living with a chronic condition such as inflammatory bowel disease was too much to cope with. He was unable to rely on the stability of his bowels while giving lectures. He chose to take early retirement without much of a fight. It took 18 months to get his pension released early on partial incapacity grounds, which took a toll, as his condition was going through a flare-up. Even though he has come to terms with his current medication, in order to help keep his symptoms under control, the IBD is difficult to live with and dictates how much travel he can do on a daily basis. It has been financially tough on John and his family, as he was the sole source of income, which has now been halved. The majority of his lump-sum payment made on retirement had to be used to fit a downstairs toilet.

I do not have to tell anyone how important it is to keep people in work, particularly in this economic climate. However, we have to accept that people with fluctuating health conditions may be in or out of work, and employers have to adapt to the different needs of those with the illness.