Living and working with Crohn’s & Colitis
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.