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Professor Stephen  Bevan

Living and working with Crohn’s & Colitis

Authors: Professor Stephen Bevan Stephen Bevan

20 May 2011


Yesterday (19 May) I spoke at the Parliamentary launch of a new report looking at the employment experiences of people with Crohn’s Disease and Ulcerative Colitis. Conducted by Crohn’s and Colitis UK, the survey-based research looked at the long-term impact of inflammatory bowel disease (IBD) on the career aspirations, opportunities and choices of the 240,000 people in the UK with this condition. I have been a member of the research steering group.

The event was hosted by Lord Prescott, whose daughter-in-law has Crohn’s disease. Also speaking was TV personality and voice coach Carrie Grant, who was diagnosed with Crohn’s disease at the age of 18, and three other people with varying experiences of trying to pursue a career while being treated with IBD.

IBD is one of those conditions which is typically diagnosed among young people and which can seriously disrupt their education and early careers. Both Crohn’s and Colitis can produce fluctuating symptoms of urgency, diarrhoea, pain, profound fatigue and anaemia, with, for some patients, associated inflammation of the joints, skin, liver or eyes. Malnutrition and weight loss are common, with patients often altering their eating habits to alleviate symptoms. While many people with IBD can have their symptoms alleviated somewhat by drug therapies, between 50% and 70% of patients with Crohn’s Disease will undergo surgery within five years of diagnosis.

The research involved interviews with 1,906 people – 1,107 with Crohn’s disease and 799 with Ulcerative Colitis, and it found that IBD has a serious impact on the career aspirations of young people, revealing that more needs to be done to encourage and help young people to secure and progress within the career of their choice. The survey also reveals the significant impact of IBD on the productivity of workers, from the start of their career right through to retirement. However, the survey also revealed that, despite facing such challenges to productivity, employees with IBD tend to be exceptionally conscientious, with four out of five respondents reporting that they go to work even if they do not feel well enough.

IBD has a significant effect on working life before it has even begun. The report shows that young people with IBD find the prospect of gaining their first job a daunting challenge - a key factor since most IBD patients are diagnosed between the ages of 16 and 29. The report highlights serious shortfalls in employer awareness of the needs of people with IBD and patchy provision of reasonable workplace adjustments, such as access to a toilet when required and the ability to work flexibly.

Not only do employees with IBD have a strong work ethic, 52% of the survey respondents claimed that that they work harder to make up for any shortcomings as a result of their condition and 40% worry that their colleagues or managers think they are not “pulling their weight” at work on occasions. Of the young people questioned, 69% feel that their IBD has prevented them from reaching their full educational potential, and over half have already ruled out some career options. When thinking about future employment, most (82%) are worried about managing their symptoms; 66% are concerned about not being able to do their work adequately and 65% worry about employer flexibility.

The research reveals the importance of employers making ‘reasonable adjustments’ to working time and workplace facilities. It is especially vital that employers are educated on the fluctuating nature of IBD symptoms, and that they take steps to provide people with Crohn’s and Colitis with high-quality work with opportunities for training, development and career progression.

The report concludes that policy makers need to ensure that people with Crohn’s and Colitis receive adequate support through the benefits system to help them through intermittent and unpredictable periods of incapacity for work. Employment and Support Allowance (ESA) and the Work Capability Assessment (WCA) need to account for, and not be biased against, people with fluctuating conditions who may not always be ‘fit for work’. It also argues that GPs should ensure full use of Fit Notes, with an understanding of fluctuating nature of symptoms, including making full use of the narrative section of the form which allows recommendations for reasonable adjustments in the workplace.

For me, the most insightful comment (of many) of the launch event came from Carrie Grant:

“People with IBD”, she said, “have had to demonstrate extreme determination, persistence and determination to overcome their condition just to get into work. Aren’t these exactly the characteristics that employers want? People with IBD are not a burden – we are treasure!”.

Amen to that.

Read more about our work on long term conditions

Comments in Chronological Order (Total 11 Comments)

Sadekya Foundations

25 May 2011 2:33PM

Well, all employees who demonstrate determination of an extreme degree and are persistence personified are the employees that are extremely rare indeed.

David Sime

12 Aug 2011 6:35PM

Fantastic that such a broad study has been conducted into the effect of Crohn's Disease and Ulcerative Colitis on people just trying to live a normal life - of which work, of course, is a vital part.
The increasing levels of awareness of these inflammatory bowel diseases demonstrated by the government, employers and the public at large are very heartening to long term IBD sufferers like me.
Keep up the good work!

Pauline Winchester

05 Dec 2011 11:32PM

It's great that this study has been done - but unfortunately it doesn't help me. As a nurse I thought my employers would actually have a bit more understanding of my condition - unfortunately not so. I don't 'look sick' so I find that I am not believed when I say I'm not well. As for 'reasonable adjustments' well for a nurse they are non existent. I hope some good comes out of this study.

Jonathan

07 Feb 2012 2:25PM

I employ 35 people and 3 have Crohn's. Two of them show the determination you mention but the other shows just a little too much. The person concerned is off work a great deal, but has recently started to come into work when they are clearly unwell. On asking why, they replied that they "need the money". I am very worried about the situation because as a business under severe recessionary pressures we cannot afford to pay for long periods of sickness and as a consequence I believe this person is forcing themselves into work when they really should not be doing so for their own health. Does anyone have any suggestions?

Charlene

01 Apr 2012 10:30PM

I was working for Social Services in Local Government when I was diagnosed with Crohn's Disease. At first they were very understanding and supportive, but after my second relapse the resentment began to show. I came back to work after six weeks in hospital and six weeks home rest... My docor said I should have stayed at home to recover for longer but I felt like I was letting my colleagues down. When I returned my Manager said that because it was Februaury and I had not taken 'Annual Leave' that year, I had to (by law) book off some holiday days. I said I did'nt want to, what would that look like. But she stated I had to and it had to be taken by 1st April. When I returned everything was different, my Manager and colleagues just seemed to ignored me. My one close friend there whom understood my condition, said that the girls had complained to my manager saying that this was a slap in the face to them, that I did'nt actually look sick. That they get up and put in a full day every day and I get paid half the year for 'staying in bed'. I was very upset and self conscious, and as a result my condition worsened again. Local Government then suggested that I was obviously not fit for work. That it was not a sign of weakness on my part to accept the hand life had dealt me, but that I must understand an employer needs reliablity and consistency and that I could not provide. So they dismissed me under Occupational Health. Now 8 years on I have received a letter stating I have to be reassessed for my Incapacity Benefit, for Employment Support Allowance. They want to see if under the new criteria I am 'fit for work'. I was never unfit for work and Local Government were the ones who technically fired me. If they were not understanding and supportive of my condition, how can they justify now that any other employer would be and see me fit for work . My condition has not changed, the only thing that has changed is the government has run out of money fiddling their expenses and now they want to take it out on me. I have never said that I would not work or that I am unfit, but we are technically unemployable. Like the gentleman stated above me, Employers are looking for 100% from their employees in these troubled times, and rightly so. I cannot give 100%, I can give a good 75% but that is not enough when there are 100+ applicants applying for every job. Why would an employer employ me when I have to be honest and say, I have a cronic illness that means I may not make it in some mornings, or maybe weeks at a time. They will write me off as fit for work, knowing that I am unlikely to ever find work. Make me sign for JSA, go for interviews where I have to explain my condition. 'I bleed from my rectum and have severe diarrhoea'. It's embarrasing and degrading. Ever seen the diarrhoea scene in American Pie? Living with it is'nt that funny... They have no idea, the more stress and anxiety a person with a IBD is placed under the worse their condition becomes. More hospital visits, more medication - steroids in high doses which have dangerous side effects of their own after years of taking them, leading to possible bowel surgery or Cancer. It's funny how every other person in this country is allowed to phone in sick with sickness and diarrhoea, and are seen as unfit for work allowed to be absent. Our condition is diarrhoea and severe stomach pain, but we are fit for work. Discrimination... you tell me?

Michael Stannard

28 Jan 2013 2:56PM

I work for the Metropolitan Police and have endured untold levels of stress due to senior managements 'lack of understanding' surrounding Crohn's. It the same story of 'if you don't look ill then your abusing the sickness'. I finally managed to have my crohns related sickness recorded on my sickness record only to be told I am eligible for a 6 month Action Plan. The idea of the action plan is to reduce sickness and effectively if I take any more time off sick from work then it will lead to my dismissal from the MPS! If anyone can help me, please advise as ive been through all the avenues, from senior management, my union rep, to the mayor of London's private office and nothing has been done. Im now 4 months into the action plan and had to attend work only to be send home post Christmas because I was physically sick at work! PLEASE HELP.

Emma Highfield

19 Feb 2014 11:08PM

Im 19, ive been in and out of hospital for the last 3/4 years! With the same answer from the consultants "we dont no what it is". Resuntly in the past 3months ive been in and out of hospital constantly with extreme abdominal pain, my cousin has chrones which the hospital took 5yrs to diagnose! I have all the same symptoms&problems the consultants want rule it out BUT there not diagnosing the condition. I started working for Bentley Motors under the agency addeco in august, I love my job but im on the verge of being sacked due to my absences (which are coursed by the abdominal pain) the crazy thing is im constantly in pain its just bare able but I do get waves of extreme pain. I even find myself physical dragging myself to work when im unwell for the pure fact I don't want another absence against my name. The agency are very critical about absence and only allow workers a minimum of 3 a working year of which im currently on my 5th!! The OC health team are fully aware of my situation and problems and are very understanding BUT however the agency and fellow workers see it as "oh shes off again". Im terrified of loosing my job and can sence it coming, im doing my best but at the moment the extreme pain is happening more frequently and the only pain relief I can have due to me being undiagnosed is tramadol (which is not touching the sides) which means once again im off work as signed off by the doctor AGAIN. People are constantly moaning at me that I dont eat but food cripples my stumach, alls I seem to eat is loads of chocolate and crap as I'm aloud as part of a low residue diet but im slowly lossing weight? The hospital seem to be making everything as hard as possible, loosing referals and cancelling appointment im at my absolute whits ends! Alls I want to do is wake up in the morning and have no pain so im able to go to work and last a full shift! QUESTION: can my company sack me for absence if I havent got an "official diagnosis"?
Apologies if this is a jummble im dislexic !

Andrew

16 Apr 2014 6:55PM

Having Crohns disease, colitis, or issues such as IBS can definitely make it harder to find employment, but in reality, if you can do the job properly and have the qualifications for the job, an employer shouldn't keep you from working for them even if you suffer from any of the above. If you show an employer the value that you will bring to the company and the profit you can help it make, you will be more likely to get hired, even if you face challenges that others do not.

sadsa

13 Jul 2014 10:51AM

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Natalie

20 Aug 2014 4:33PM

Looking for a job is stressful, I found a job through the agency Office Angels, the lady was so helpful setting up a morning interview with the company later that week and e-mailing pointers and tips to help me through a successful interview. The day before the interview I started to feel unwell with my Crohns which had been very on and off for a few months now, I hoped that with a good night sleep I would feel fine the next morning for my interview. Well I didn't I felt worse hadn't slept much during the night due to pain and couldn't be away from the toilet. I called Office Angels the moment they opened to let them know I was feeling unwell and without going into too much detail 'couldn't leave the flat'. I apologised and apologised for the short notice (I really hate letting people down) and asked if it could be rearrange for the following week. The girl's response was 'no it couldn't be rearranged and that they would no longer help me with my job search as I was unreliable'. I was so upset and shocked (I've never been called unreliable in my life!!) I just didn't know what to say to that and just said 'Ok goodbye' after the shock had worn off I was so angry which obviously wasn't helping my symptoms, I did e-mail the girl I spoke to to explain that I had Crohns Disease and what the symptoms were but I had no reply (surprisingly).
The media coverage at the moment for Crohns Disease is excellent and raising awareness of the symptoms to employers, employees and recruitment agencies is just what sufferers like myself need, as so many people have said on here I may look fine but inside I am most certainly not and if you are like me find it hard to tell people I don't know all that well about my bowel movements!

John Collier

10 Sep 2014 10:15AM

Great blog, As a sufferer of Crohn’s disease my experience of work is one of ever declining terms and conditions of employment as my employer struggles to make reasonable adjustments that aren't accompanied by movement into other roles and cuts in pay. While the law exists to make reasonable adjustments no law exists to protect the salary of those for whom a demotion is identified as a reasonable adjustment. However, it’s great to see these issues being debated and people raising the awareness of the impact these often hidden conditions can have.

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