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The Work Foundation - More specialist nurses needed to improve work outcomes for people with IBD

A report released recently, Working Well – Promoting job and career opportunities for those with IBD, will call for an increase in the number of specialist nurses given the crucial role they play in supporting those with Inflammatory Bowel Disease (IBD) - such as Crohn’s Disease and Ulcerative Colitis - to stay in work. Lancaster University’s Work Foundation will also recommend that government services such as Access to Work and Fit for Work are reformed to better accommodate those with IBD, given it now affects around 300,000 people in the UK and costs the economy around £470 million each year.

The paper, based on a series of interviews with employers and employees, explores the impact that IBD has upon the world of work. Participants described how the unpredictable and disruptive nature of the condition also has psychosocial implications including anxiety, depression and a reduced sense of wellbeing. Job satisfaction, financial considerations and job flexibility were the key factors when deciding their employment options.

Specialist nurses were quoted as a great source of support by both employers and employees in helping patients manage their condition when in work. This advice ranged from providing information and support on initial diagnosis, providing other sources of support, and discussing treatment options. One participant suggested 'getting the support from the specialist nurse is the most fantastic thing I have done [and that] it provides an invaluable bridge between the actual patient and the consultant… which is incredibly valuable'.

Participants mentioned the essential work of patient charities like Crohn's and Colitis UK who have raised awareness of IBD and reduced the stigma attached to the condition. However, it is crucial that more information reaches employers to help remove some of the anxieties individuals may have with disclosing their condition at work.

The paper provides a number of recommendations for individuals, employers and other stakeholders to help improve the experience of those at work. They include:

  • 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 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

Commenting on the paper, lead author, Dr Zofia Bajorek, a researcher at The Work Foundation, said: “Individuals with IBD will do anything they can to work in their chosen career. However, our evidence suggests various factors, including individual constraints, healthcare related support and organisational management structures remain as barriers to employment. 

'Joined-up working from relevant stakeholders ensuring positive employment relationships, supportive organisational cultures, improved diagnosis and awareness of IBD and the appropriate information provided to employees and employers as to how IBD is managed in the workplace must be improved so that individuals with IBD can enter, remain and ensure productivity in the workplace.'


In addition, Helen Terry, director of policy, public affairs and research at Crohn's and Colitis UK, said:'IBD nurse specialists play a pivotal role in the delivery of high-quality care and improving quality of life for their patients. Our recent survey found that those patients who had support from an IBD nurse were more than twice as likely to be ‘very satisfied’ with their care. 

“It is regrettable, therefore, that the latest UK-wide audit of IBD services found that 14% still provide no IBD nursing for their patients and many others fall short of the recommended minimum level set out in the IBD Standards. The expertise specialist nurses offer to patients is based on their unique understanding of the way in which IBD impacts on all aspects of life, including the importance of work and access to employment opportunities. We cannot emphasis enough the value that patients place on this support.'

Notes to Editors:

Two of the report’s authors, Dr Zofia Bajorek and Professor Stephen Bevan are both available for interviews, blogs, briefings and written comments.

The report is supported AbbVie. 

The report contains quotes from case studies which are available to use in pieces. Case studies might be available for pieces.

The report, Working Well – Promoting job and career opportunities for those with IBD, is available under embargo from the press office.

Lancaster University’s Work Foundation transforms people’s experience of work and the labour market through high quality applied research that empowers individuals and influences public policies and organisational practices. The Work Foundation is part of Lancaster University – an alliance that enables both organisations to further enhance their impact.

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