Inflammatory Bowel Disease

Jim Shannon Excerpts

Tuesday 31st January 2012 Westminster Hall

[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.”

[Jim Shannon (Strangford) (DUP)]

I thank the hon. Member for Islwyn (Chris Evans) for bringing this matter to the House. The hon. Member for Brigg and Goole (Andrew Percy), who spoke earlier, has illustrated very clearly the issues involved. As elected representatives, every one of us has to deal with these issues every day with our constituents.

The hon. Member for Islwyn has referred to work. The civil service in particular seems to have issues with its “early warning scheme”, as it calls it, and there is no flexibility in that system. Does the hon. Gentleman feel that it is time for the civil service to address that issue, so that people who want employment in the civil service can stay in it and not have to leave?

[Chris Evans]

Yes, absolutely, and that is really the crux of the issue. IBD is not a condition that causes symptoms all the time; there are flare-ups, and then the condition goes back down and people go back to normal life. If there is a problem in the civil service, I hope that the Minister will address it when he responds to the debate.

In today’s economic climate, with youth unemployment at the level that it is, we cannot allow someone with IBD to believe that their condition bars them from the job market. I heard another story of a young person, James, who was diagnosed with IBD in his early teens. James is currently studying for a degree at the university of Sheffield, but he is worried about managing his symptoms in the workplace when he graduates and begins to look for work in what is already a challenging job market. James has said:

“I think the use of the toilet without restrictions has to be paramount. I also think employers should give employees the opportunity to confidentially declare any illnesses which may affect the efficiency of their work. I think employees, regardless of what illness they have, should be allowed to use the facilities, so people who are ill do not feel isolated. Also, I think there should be no stigma attached to having the sudden urge to use the toilet. This is often the case, I would have thought, if you work/live with the same people for a long time. I am concerned that, after having worked so hard to get my first job after I graduate, if I have to have time off for illness or procedures I will be under more pressure in my job. The job market is so competitive and if someone is less ill than me, I will be placed under more pressure due to a situation beyond my control. It is pretty inevitable that I may need time off while working, but due to the competitiveness of the job market there will always someone who will be able to take my place.”

--- Later in debate ---

[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.

[Jim Shannon]

One clear issue is the disability living allowance and the benefits system. Does the hon. Gentleman feel there are occasions—I am aware of them—when the benefits system is not flexible enough to enable someone to achieve disability living allowance and to return to work later, if they have to?

[Chris Evans]

That is why we need flexibility in the benefits system. When people have this debilitating disease that very often stops them from working—they cannot do anything, they cannot leave the house—they cannot claim benefit. They do not even slip into the system or anything like that. That has to be borne in mind.

In the week that we are debating the remaining stages of the Welfare Reform Bill, it is important that the benefits system reflects the different needs and requirements of those with fluctuating health conditions. It is crucial that those with IBD do not struggle to cope at work through illness, or live in poverty when they are unable to work. I have heard stories about people with the disease having no income, which forces them out to work. Take this testimony:

“As my symptoms are not regular, I do not qualify for any benefits. So when I am actually too ill to work, I must simply either choose not to work or lose money. It is stressful having to explain the situation without going into too much detail.”

The Government need to recognise the disabling elements of long-term fluctuating conditions such as IBD and include provision for those in the benefits system. The importance of that is underlined by the Government’s introduction of universal credit, and the need to attend back-to-work interviews. The unpredictable nature of IBD means that people with the condition, who are required to attend interviews and undertake other work-related activities, may at times require flexibility, should they experience a flare-up of their condition.

Ultimately, IBD does not have to hinder someone’s work potential. People live with the condition and make a positive impact in the world of work every day. All they ask for is sensitivity and understanding. I do not think that is too much. Therefore, I believe that employers, health professionals and policy makers have a duty to ensure that there is a greater understanding for those with fluctuating conditions such as IBD.