Promoting job and career opportunities for those with IBD
Authors: Dr Zofia Bajorek
21 January 2015
An estimated 300,000 people suffer from Inflammatory Bowel Disease ( IBD) in the UK. IBD is a name for a group of diseases that cause inflammation of the gastrointestinal tract, the two main types being Crohn’s Disease and Ulcerative Colitis. IBD is a fluctuating, chronic, long-term condition where individuals may experience symptoms such as stomach cramps, blood in stools, and an urgency of needing the toilet. The diagnosis of IBD can occur at any time, but IBD is common in an individual’s teens or early twenties, a crucial time when they are moving from education to employment thus having an impact on an individual’s career decisions. Additionally, individuals may experience associated anxiety, depression and fatigue which affects both their quality of life and employment.
'Working well: Promoting job and career opportunities for those with IBD' studies the role that IBD has in an individual’s employment decisions, what challenges those with experience of IBD in the workplace face, and how IBD could be best managed to ensure that those who are able to and want to work with IBD, do. The report also included the much neglected employer’s perspective about how to manage an employee with IBD with the inclusion of employers who work in occupational health and had experiences of managing individuals with IBD.
Our results indicated that:
- The nature of IBD ( fluctuating ,often hidden and embarrassing symptoms) has implications for employment and how IBD could be managed at work, but psychosocial factors (including depression and anxiety) also played an important role (although these were somewhat related to the presence and nature of IBD symptoms).
- Early referral to a specialist IBD nurse reduced associated anxieties, and specialist IBD nurses were unanimously praised for the support they provide.
- Factors which affected the career choices and work patterns for those with IBD include the level of symptoms experienced, the level of stress in the job and the length of commute. However, an individual’s overall job satisfaction and financial circumstances were also taken into consideration.
- The employer-employee relationship was seen as vital in helping an individual with IBD at work. Good line management included being sympathetic, understanding, having an awareness of how IBD could affect an employee emotionally and physically, and providing reasonable adjustments to enable the employee to remain in work A trusting relationship with open, honest communication was seen as vital in helping an employee to disclose their condition and agree adjustments. There was evidence of reasonable adjustments made for employees including: increasing flexibility with regards to place and hours of work, provision of necessary facilities, and time off for hospital appointments.
- However, participants also discussed a number of ways through which the management of IBD can be improved from a range of stakeholders. Employers can improve the line manager – employee relationship, improve facilities and flexible work practices and develop the roles of occupational health and HR. Individuals with IBD can improve the awareness of the condition themselves and learn how to self-manage and healthcare professionals can help with earlier provision of information about IBD and offer both medical and psychological support.
The employer’s perspective indicated that:
The report provides a number of recommendations for relevant stakeholders that could be implemented to improve the management of IBD at work:
- Employers have a number of policies and practices in place to help manage employees with IBD, but they were reliant on line managers to ensure that they were implemented correctly.
- Line managers were described as ‘critical’ in the development of the employment relationship and are important to develop communication channels to help with disclosure and discuss the reasonable adjustments to put in place.
- Employers reported that improvements to the management of IBD in the workplace could be made from a range of stakeholders, highlighting that joined up practice is needed and is the most preferred option for improving the management of IBD at work at reducing any stigma associated with it.
- Individuals equipping themselves with information and having the confidence to disclose their condition
- Employers ensuring that line managers are good people managers and developing a supportive culture which offers flexibility and access to occupational health services
- Healthcare professionals ensuring work is a clinical outcome of care and expanding numbers of specialist nurses
- Patient charities raising awareness among employers
- And government ensuring that the Access To Work and Fit For Work should address the specific need of those with IBD
The report clearly highlights that individuals with IBD want to work, and in many cases have the health to work, however a range of inter-related factors still provide a number of barriers to managing IBD and employment. How IBD is managed in the workplace can be easily improved so that individuals with IBD can enter, remain and ensure productivity in the workplace.
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