Using original patient research, this report demonstrates that:

• People with IBD often retire young: the median age of retirement for people with IBD is at least 5 years younger than among the UK population as a whole. Around a third of retired people with IBD surveyed (30%) had retired before the age of 50.

• IBD often plays a major role in the decision to retire: among retirees under 50 with Crohn’s Disease, nearly three quarters (72%) had taken the decision because of the impact of IBD.

• Retired people with IBD often experience a lack of financial independence: a significant proportion of retired people with IBD are at least partly living off savings, their partner or friends and family. Almost half are not accessing state support including the state pension. Anecdotally, this seems to be a particular problem among those who have had to retire early and are not of pensionable age.

While early retirement can be a positive choice, forced early retirement is an added worry for people with IBD - particularly at a time when the state pension age is rising and the value of occupational pensions are under pressure. Leaving the workforce early and against one’s wishes can have a impact on a person’s quality of life; can lead to considerable financial anxiety, create family instability and limit participation in society and the economy.

The Inflammatory Bowel Disease and the retirement decision report looks at how we can support people in their choices; whether this is to remain in work for longer or to retire. It draws on data from a 2011 survey commissioned by Crohn’s & Colitis UK, supported by an educational grant from biopharmaceutical company, AbbVie (formerly Abbott).

At least 240,000 people in the UK are affected, however recent data across Europe suggests that up to 620,000 people, approximately 1 in 102 people (based on a UK population of 62 million), may have IBD. Of the 18,000 people that will be diagnosed with IBD this year, more than 10,000 will be between 16 and 29 years old.

What needs to be done?

IBD does not have to be a hindrance on the workforce. The report highlights a number of recommendations for governments, employees and health care providers to act on.

Politically, the Government should create a budget for local authorities to fund local joint working to improve health and work outcomes for people with fluctuating long term conditions such as IBD.

The Department for Work and Pensions and its devolved equivalents should work with bodies such as the Chartered Institute of Personnel and Development, Trade Union Congress and independent patient associations to develop guidance aimed at employers to help them understand the needs of employees with IBD.

Finally, employers should offer greater flexibility to employees with IBD, such as the ability to take regular toilet breaks and flexibility to see a doctor when required.