Inflammatory Bowel Disease

Tuesday 31st January 2012 Westminster Hall

13:00

[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.”

[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.”

[David Simpson (Upper Bann) (DUP)]

I thank the hon. Gentleman for giving way and I congratulate him on securing this debate. In my own company, which I have registered in the Register of Members’ Financial Interests, we have experienced this problem, as it affected one of our management team. As a company, we decided that we would facilitate that individual because they were a good worker; they were enthusiastic in what they did. Although my hon. Friend the Member for Strangford (Jim Shannon) has raised the issue of the civil service, surely the private sector needs to take a grip of this issue and a company ought to overlook the difficulties that a person—old or young—may have and see the potential benefits they can offer.

[Chris Evans]

I commend the hon. Gentleman for putting that policy in place in his company. As I have said, when I have spoken to people about IBD there is a real fear of being embarrassed about it and not being able to tell someone about it. If a company creates a culture or an environment where an employee can go to their boss and say, “I’ve got this condition,” in many cases the problem can be overcome and resolved. As the hon. Gentleman has this example of something that has worked, I hope that it can be passed on to the Minister, perhaps to solve the problem that the hon. Member for Strangford raised about the civil service.

[Glyn Davies (Montgomeryshire) (Con)]

I thank the hon. Gentleman for allowing me to intervene on him, and I do so to support the point that he is making. I have had a colostomy, having suffered from bowel cancer. As an individual, I made a huge point of being very public about that fact, including about the ways that I have dealt with the disease. And I must say that that approach has given a lot of people in my constituency hope. A disease such as bowel cancer is not something that is embarrassing any more. People talk about bowel cancer and bowel issues now as part of normal life, and it is hugely important that people in the public eye—as we used to call it—talk about these conditions and do not hide them away, so that they become more accepted by everybody else.

[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.

[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.

13:15

[The Minister of State, Department for Work and Pensions (Chris Grayling)]

It is a pleasure to serve under your chairmanship, Mr Leigh. I congratulate the hon. Member for Islwyn (Chris Evans) on securing the debate. What we have heard in the past 15 minutes is an example of this House at its best, where we all seek in as positive a way as possible to have an influence on the lives of people who are struggling with very challenging circumstances. There is no doubt that that applies to those who suffer from the two main conditions we are discussing in this debate, Crohn’s disease and ulcerative colitis, both known as inflammatory bowel disease. We understand that they are serious conditions. In severe cases they require hospital treatment and surgery, as we have heard from my hon. Friend the Member for Brigg and Goole (Andrew Percy), and they make life extremely difficult for those who suffer from them.

I would like to deal with the hon. Gentleman’s questions in two parts. In the latter part of his remarks he referred to how we treat people with the conditions in the benefit system. I would like to touch on that first, and then on employment and universal credit, which I believe will help people with fluctuating conditions.

I start with the question of ensuring that we provide appropriate support through the benefit system for those unable to work because of the scale of their condition. We seek through the work capability assessment to take sensible decisions about those with fluctuating conditions. I hope and believe that the work we have put in place over the past 18 months will improve the way the WCA works and responds to fluctuating conditions. We are continuing to look at how to improve the process in relation to fluctuating conditions.

Where the effects of the condition are such that an individual is unable to work, they will and should receive appropriate support by way of employment and support allowance. Individuals with IBD are most likely to score under the incontinence descriptor of the WCA, which recognises that in the workplace an important consideration is personal dignity. It looks at continence in relation to the ability to maintain continence of bladder or bowel or prevent leakage from a collecting device. Additionally, individuals who are either moderately or severely affected by the disease may also have restrictions in a number of other work capability assessment areas, for example, where there is low body weight, malnutrition, persistent pain and fatigue.

As a result of the hon. Gentleman initiating the debate and a number of other people raising concerns with my office recently about these particular fluctuating conditions, we have looked again at how we are handling people with the conditions who are going through the work capability assessment, because I want to ensure that we get it right. In fact, all we have identified is that people with a primary diagnosis of the two different IBDs we are talking about are more likely than other groups to be allowed employment and support allowance, to reflect the high level of debilitation experienced by many individuals with such conditions.

The majority of people with IBD who have completed their work capability assessment are allowed employment and support allowance. The statistics show that they are more likely by around a third to be placed in the support group or the work-related activity group than the employment and support allowance client group as a whole. I think we see a picture of a system that is reflective of the nature of the challenges that these people face. We will not always get it right; I never pretend that that will be the case. From what I can establish, we are already reflecting, in the way we handle people with IBD, a recognition of the severe and significant issues it can pose for sufferers.

The work capability assessment considers each case on its merits. Alongside that, it is important to state that, as the hon. Gentleman rightly said, many people can and should continue to work. There is a duty to ensure that employers understand, help, and work with people to make sure that they stay in the workplace, and I praise him for his comments on that. We have therefore ensured that the work capability assessment recognises that some people can manage their conditions successfully and return to work. In some cases, symptoms might be less severe, or might fluctuate so that they are unable to work for only short periods. Others might respond well to medication and be unlikely to have any long-term functional restrictions. For those people, it is important that we provide them either with appropriate support to stay in the workplace or with help to get back to work.

We can all play a role, as the hon. Gentleman is doing today. I also pay tribute to my hon. Friend the Member for Montgomeryshire (Glyn Davies) for his comments. One great strength of the House is that we can take a lead. Sometimes we might be frustrated that individually, as Members of Parliament, we cannot wave a wand and change something overnight, but we have the ability to access, influence, create platforms and shape the way people think. Within our constituencies and beyond, we have the ability to influence the way employers think, as the hon. Gentleman is undoubtedly seeking to do today. I commend the message that he is sending out. It is one that I hope Members will continue to send in relation not only to IBD but to the many fluctuating conditions that make people’s lives more difficult, although they should not and need not make it impossible for people to stay in the workplace. A bit of understanding from an employer can go a long way in preserving skills important to the organisation while giving employees the flexibility to deal with the challenges that they face.

However, for those who are struggling and finding that their employers are less supportive, which is bound to happen, we seek to personalise support for each individual through the work done by Jobcentre Plus and the Work programme. Along with both sets of organisations delivering support for the unemployed— our Jobcentre Plus offices up and down the country, and the different organisations working with the Work programme—we seek to individualise support as much as possible and ensure that we match individuals to employers.

One great way to overcome the challenges that people with different disabilities and health problems face in the workplace is by matching individuals to employers who understand, respect and support them. We encourage our Work programme providers and Jobcentre Plus offices to work closely with charitable groups for people who face different health challenges in order to ensure that organisations have the best possible understanding of the support that they need, so that we can do job-matching work to the best of our abilities.

In addition, where mainstay provision is not appropriate, we provide specialist support through Access to Work and Work Choice, which are available to the individuals with the most complex support needs. Each year, Work Choice aims to help about 9,000 people with disability and health problems into work, and Access to Work provides support to about 35,000 individuals.

I agree with my hon. Friend the Member for Brigg and Goole that it is essential for employers to make reasonable adjustments, which might include unrestricted access to toilets for people with IBD. It is common decency, and there is no earthly reason not to. I know we have not always moved beyond the world in which we have lived, but one would hope that in today’s world, not many employers would deny someone access to a toilet. I believe that in most of our economy—ideally, in all of it—that should be a management practice of the past. Employers now have a duty under the Equality Act 2010, and they are putting themselves at risk if they do not pay attention to an individual’s needs, if those needs are reasonable and sensible. I certainly regard unrestricted access to a toilet as being entirely that.

We are also trying to ensure that all those who work with us in the Department for Work and Pensions networks and who have a responsibility for health care—particularly health care professionals working with people undergoing the WCA and, in due course and Parliament permitting, the assessment for the new personal independence payment—have an understanding of the nature of the health conditions that they will confront in their work. The doctors and nurses working with us and Atos Healthcare on the assessments, for example, already have a knowledge of IBD from their professional training. However, those who are not from such a background—physiotherapists, for example—undertake a training module on inflammatory bowel disease as part of their work capability assessment induction. A learning set on continence, including a focus on IBD, is offered to health care professionals as part of the Atos Healthcare continuing medical education programme. To assist them in their knowledge of such conditions, health care professionals also have access to an evidence-based repository.

We try hard to ensure that we provide the people who work for us with access to information about fluctuating conditions, mental health problems and other issues that they will come across in their duties, so that they are as well placed as possible to be responsive in their decision-making and to get those decisions right. We have no interest whatever in getting such decisions about people wrong. This is about taking the right decisions and providing support for people who have the potential or are perfectly able to continue to work, and then finding the right employers for them. However, it is also about understanding the limits of an individual’s ability to work and ensuring that we do not end up making someone work who cannot realistically do so.

We are continuing to work to improve our knowledge, understanding and processes, and the responsiveness of those processes, for people with fluctuating conditions. In the past few months, our adviser on the work capability assessment, Professor Malcolm Harrington, has carried out a project in partnership with organisations that represent people with Crohn’s disease, IBD and other fluctuating conditions to enable us to understand better how we can improve our processes to ensure that we take well-informed, appropriate decisions. The group has made a number of recommendations to us through Professor Harrington. We are considering our response, but I have given a clear commitment that the Government will do everything that we realistically and reasonably can to improve the way we work and ensure that we take the right decisions.

It is important, too, to find the dividing line. That will always be a difficult challenge for any Government, because, as the hon. Gentleman has said, there are two sets of points. The first is about employment and the need to get things right for those in work, and the second is about the need to get things right in our benefits system for those who cannot work. Finding a dividing line between the two is very difficult. There is no simple black-and-white answer to the two sides of that problem. The Government must do everything we can in our assessments and judgments to make our decision-making as accurate as possible. There is no exact science, of course. When we come to that grey area, no individual on the borderline is definitely able or unable to work.

I give the hon. Gentleman every commitment that our goal is to get right what we do. In all our reforms, including the reforms coming through Parliament this week to which he referred, it is not our wish or intention to do the wrong thing by people who find themselves in a difficult position in their lives. We have to find the correct approach in one of two different routes. It might involve finding the right support to get them into work; it might involve getting them into the benefit system. However, what we are trying to avoid is sending people down the wrong route: for example, somebody with the potential to work who is not asked to do so, or somebody who has the potential to work but is not encouraged to do so.

All of our reforms are about taking the right decisions, as far as we possibly can, by those individuals, and providing support, knowledge, and understanding for people with such conditions. We will not always get it right, but we will do our best to do so, and to deepen knowledge and understanding right across the workings of the DWP about IBD and other fluctuating conditions suffered by the people whom we seek to help.