Make IBD work!
19 May World IBD Day – Awareness raising campaign
3.4 million people in Europe (10 million worldwide) live with Crohn's Disease or Ulcerative Colitis (also known as Inflammatory Bowel Disease - IBD). With IBD on the rise and mainly affecting young people of working age the European Federation of Crohn´s and Ulcerative Colitis Association (EFCCA) has decided to focus this year´s World IBD Day efforts on Work and IBD.
We want to raise awareness of the impact IBD has on a person´s professional life. Many people with IBD want to and are able to successfully work. We believe that with some comprehensive strategies at the workplace (i.e. flexible working hours, teleworking etc. ), a better understanding of the disease and a supportive work environment we can make IBD work!
Especially in this difficult time where the world is facing the COVID-19 pandemic, it is more than ever important to support and cooperate with patient communities. We have seen that work measures that have been put in place by many national authorities such as for example teleworking or flexible working hours can have a positive benefit for all.
Our key messages are:
Comprehensive policies and strategies at the workplace that take into account the situations of people with chronic conditions such as IBD have an overall positive impact not only on the patient but society at large
Direct and indirect costs of IBD can be reduced by better prioritizing effective IBD treatment.
There is a direct link between employment and its positive effects on the general well being of a person.
In the lead up to 19 May we will be posting stories of
people with IBD and how they manage work.
- Work and Wellbeing
Work and wellbeing
Numerous researches shows that work can have a positive influence on a person´s wellbeing:
Work is an important driver of the social gradients in health. Work provides income & material well-being, meets important psychosocial needs, and brings participation in society. Work is generally good for health, mental and physical. But work needs to be ‘good work’ in good workplaces.
For people with chronic diseases such as IBD being in work is very important. A study carried out by our member Afa RCH Crohn revealed that IBD patients strongly aspire to holding a stable job even if it means holding a position for which they are over-skilled or of lesser interest to them. Enquête vie professionnelle et MICI
An interesting pilot project called Activ84worK (Activate for work) which was carried by several stakeholders and with the support of the patient association Crohn-en Colitis Ulcerosa Vereniging (CCV vzw) in Belgium aimed to stimulate professional activity and reduce absenteeism by removing work-related stress factors and providing patients with more flexible working conditions. The results showed that that teleworking and flexible working conditions improved labor participation of IBD patients. Read more about the study.
In a survey carried out by Crohn's or Colitis UK it was found that people with Crohn's or Colitis who were feeling well had a total work productivity score better than that of the general healthy population. More than half of the respondents reported giving more effort at work to make up for any shortcomings which might result from their Crohn's or Colitis.(Crohn’s, Colitis and Employment - from Career Aspirations to Reality) Other research since the survey has shown that people with Crohn's or Colitis want to work, and in many cases have the health to work, however a range of factors can cause barriers to managing their Crohn's or Colitis at work.
Employment has a proven positive affect on health and wellbeing, especially in relation to mental health outcomes. This is particularly true of good quality work: work that is fulfilling, sufficiently well paid and stimulating. Having a job that works for you is not only about financial matters but also about giving people a sense of purpose and fulfillment in order to be an active member of society. It's much more difficult getting back into work if you're unemployed and being unemployed has been proven to be bad for people's emotional and physical health and wellbeing.
European policy context: know your rights
European policy context: know your rights
The Joint Statement on “Improving the employment of people with chronic diseases in Europe” is common position of stakeholders from the health, social and employment sectors in Europe on the issue of the employment of people with chronic diseases.
It offers recommendations to EU and national policy makers to address the identified challenges.
It points to the prevalence of chronic diseases and disabling conditions that have been growing in the EU and the wider European region over the past decades. Beyond the direct costs of healthcare to treat people with chronic diseases, which amount to €700 billion in the EU, workers with chronic conditions and employers incur indirect costs.
However, people with a well-managed chronic disease are able to work normal hours and many people affected by chronic illnesses can, if enabled to, work under flexible working times and adapted conditions, which allows them to be fully part of a country’s workforce and economic growth.
In order to achieve inclusive and sustainable growth in the EU as targeted in the Europe 2020 Strategy, every person of working age should be given an opportunity to enter and remain in the labour market, including people with chronic diseases. Ensuring the conditions for the employment of people with chronic diseases and disabilities also falls within a human rights-based approach to work and employment.
The European Chronic Disease Alliance (ECDA) is a coalition of 11 European health organisations sharing the same interests in combating preventable chronic diseases through European policies that impact health. ECDA represents millions of chronic disease patients and over 200 000 health professionals.
Via the EU Health Policy Platform led by the European Commission, ECDA has been leading a thematic network on the topic of the employment of people with chronic diseases. 16 organisations from the health, social and employment sectors partnered in the work, which led to the development of a framing paper and a call to action to ensure the sustainable employability of people with chronic conditions in the EU.
Although there is no specific reference to chronic diseases such as IBD, Chapter I: Equal opportunities and access to the labour market states that “regardless of gender, racial or ethnic origin, religion or belief, disability, age or sexual orientation, everyone has the right to equal treatment and opportunities regarding employment, social protection, education, and access to goods and services available to the public. Equal opportunities of under-represented groups shall be fostered. “
Chapter III: Social protection and inclusion stipulates the Inclusion of people with disabilities: “ People with disabilities have the right to income support that ensures living in dignity, services that enable them to participate in the labour market and in society, and a work environment adapted to their needs.”
Individual EU countries must make sure that their national laws protect these rights laid down by EU employment laws (Directives).
As stated in the European Commission’s White Paper, Together for health (123 KB PDF), fulfilling the Europe 2020 strategy (which aims to turn the EU into a smart, sustainable and inclusive economy promoting growth for all) has one prerequisite, that is, a population in good health. One of the main objectives of the EU health strategy is ‘fostering good health in an ageing Europe’. Ageing, as a result of low birth rates and increasing longevity, is one of the main European social challenges and is likely to increase demand for healthcare due to an increase in the prevalence of chronic diseases while also reducing the working population. There is thus a need for policies to foster active, healthy ageing to promote employability and employment and to enable people to stay active for longer.
It is not easy to identify specific programmes or measures addressed at people with chronic diseases, particularly employment initiatives. Although national policies are diverse, in most countries the focus of the initiatives developed by public authorities and social partners is people with disabilities. In many cases, policies addressed at those with disabilities are the only existing measures affecting the employment situation of people with chronic diseases (who may or may not be specifically mentioned in these policies). Although national regulations concerning labour incapacities and/or disabilities are widespread in Europe, many countries do not have an official definition of the term ‘chronic disease’ in their labour legislation.
Broadly speaking, all countries have labour laws to protect employees at work and promote equal treatment, combating discrimination towards people with disabilities or health problems.
The Pillar of Social Rights is about delivering new and more effective rights for citizens. It builds upon 20 key principles, structured around three categories:
Equal opportunities and access to the labour market Fair working conditions Social protection and inclusión
Every EU worker has certain minimum rights relating to:
health and safety at work: general rights and obligations, workplaces, work equipment, specific risks and vulnerable workers equal opportunities for women and men: equal treatment at work, pregnancy, maternity leave, parental leave protection against discrimination based on sex, race, religion, age, disability and sexual orientation labour law: part-time work, fixed-term contracts, working hours, employment of young people, informing and consulting employees
- The cost of IBD
The costs of IBD
IBD is reported to cost Europe up to €5.6 billion per year in direct healthcare costs. However, the costs of IBD are not just borne in the healthcare setting. IBD costs society in lost working days, lost days at school or in education, lost family time and can cause psychological issues such as anxiety and depression. Studies have shown that the economic burden of IBD on society is up to 68% of the total cost, meaning that the true cost is likely to be in the tens of billions of Euros.
In 2019 EFCCA promoted a Europe wide study to reveal the invisible costs of IBD to society. The Indirect Costs of IBD study analyzed data from over 3500 people with IBD from 27 countries in Europe and beyond in order to map and compare the invisible costs related to IBD. More info see below.
A study on the economic burden of IBD carried out by the Italian national IBD patient association AMICI in collaboration with the Alta Scuola di Economia e Management dei Sistemi Sanitari at the University Cattolica del Sacro Cuore in Rome involving 2426 patients estimates for the first time the average annual cost that IBD patients must pay out of pocket at 746 euro; however, when taking into account the general productivity losses caused by suffering from this disease this average annual cost reaches 2.258 euro.
Therefore, patient engagement is an ethical and practical priority not only for the patients and their families but also for the National Healthcare System. As pointed out by Matteo Ruggeri, professor, health economist and scientific manager of this study, “This study allows to pinpoint all the cost drivers not only of the National Healthcare System, but also of the society and the patients; it also allows to pinpoint how the out of pocket healthcare costs for patients are higher in regions where there are lower average income and healthcare performance indicators. These are useful directions for those in charge of redesigning the healthcare pathways to ensure the same healthcare quality on the whole country. This inequality reduction should be the most important objective of a system aimed at granting everyone equal access to healthcare.”
Another study led by Professor Kawalec from the Jagiellonian University Medical College Institute of Public Health, Krakow aimed to assess the indirect costs caused by absenteeism associated with inflammatory bowel disease (IBD) from the perspective of the Social Insurance Institution (ZUS) in Poland. It showed high indirect costs with the main component being sick leave; rehabilitation benefit and disability pension generating lower costs of lost productivity.
- Awareness raising
Awareness raising is an important element to improve the quality of life of people with IBD at the work place.EFCCA and many of its members carry out awareness raising activities in particular around national awareness raising or on World IBD Day which is being celebrated each year on 19 May.
As stated above this year our global theme for World IBD Day is on the subject of Work and IBD. We believe it is important to address not only the public at large but also policy maker at both national and EU level that are responsible for policies related to work and employment.
A survey carried out by EFCCA called IMPACT (2010-2011 ) showed that 1/5 of respondents had felt discriminated at their workplace due to IBD: 61% of the over 6000 respondents felt stressed about taking time off work with 25% having received complaints or unfair comments about it.It is therefore important to raise these issues and to provide a better understanding at the workplace of what it is like to live and work with IBD.
Our Work and IBD awareness raising campaign will be launched just before World IBD Day through a social media campaign and through making available resource material and will culminate with a EU policy event where we bring this topic to the attention of EU policy makers.
In the past valuable awareness raising campaigns have been carried out on the national level and we would like to share some of these:
The guide provides clear information and helps employers and managers understand what it means to have Crohn's or Colitis. Additionally, it considers the legislation relevant for managing people with such long-term health conditions in the UK.
- Measures at the workplace
Recommended measures at the work place:
First of all, it is important to stress that each person is unique and their needs are very different.
However there are many adjustments needed by people with IBD that often iare nexpensive or may not cost anything at all, and/or cause little disruption.
allowing time off for medical appointments or treatment, offering shorter, different or flexible working hours,
A studied carried out in Spain revealed that a staggering 74% of persons with IBD did not mention their disease before being hired and used their vacation days to recover from a flare up or to hide hospital admision. “All these difficulties could be greatly reduced with “small gestures” such as more flexible working schedules, reducing working hours and more awareness raising and education among employers” explained ACCU España.
- unlimited toilet breaks,
- moving the work station close to a toilet,
- providing a car parking space close to the entrance into work,
- allocating some duties to another member of staff,
- offering another place of work or the option of working from home,
- adjusting performance targets to take into account the effect of sick leave or fatigue.
- Resource material from EFCCA Members
Good practice case study
The Cyprus Crohn’s and Ulcerative Colitis Association (CYCCA) took an initiative, at the beginning of the year 2016, to help its patients enter the labour market, with the aim of challenging the obvious discrimination in accessing the labour market. Our target was to achieve the employment of our patients and to break their social exclusion, thus proving that they can be productive and useful employees and citizens.
We asked for a meeting with our Minister of Labour, Welfare and Social Insurance, presented our case with specific examples and suggested that the government ask for the support of the European Social Fund (ESF), in order to prepare a scheme offering financial incentives to employers who would employ IBD patients for one year, in the hope that they would prove good enough for permanent employment.
The Minister showed great sensitivity and asked for an estimate of the number of patients to be employed. It was very difficult for us to propose a realistic number of interested IBD patients, due to the lack of official statistics and the fact that many patients are reluctant to disclose their illness.
In order to avoid the risk of failure of the whole effort, we suggested expanding it to cover all chronic disease patients, putting the whole scheme under the umbrella of the Cyprus Federation of Patients’ Association. The suggestion was accepted and the Chronic Patients’ Employment Scheme was announced in October 2016 with the following terms:
Scheme duration, 1 year or until the budget is spent Budget, 1 million euros Target to employ around 100 patients Subsidy to the employers, 75% of the cost of employing each patient The interested patients must be members of an official Association which is a member of the Federation and to have a doctor’s confirmation of their disease
The Indirect Costs of IBD Europe-wide study is conducted by the Polish Association Supporting People with IBD “J-elita” in cooperation with the Institute of Public Health, Jagiellonian University Medical College, and the International Institute of Molecular and Cell Biology in Warsaw under the joint patronage of EFCCA. The study analyses indirect costs of IBD among patients and informal carers of patients with IBD. Preliminary results reveal that:
- The employment rate differs between countries and varies from 49% in Greece to at least 75% in Hungary, Poland and Portugal.
- Work time missed due to IBD (absenteeism) of patient with active disease was calculated on more than 12% while in remission on less than 4.
- Percentage of time impaired while working due to IBD (presenteeism) was 26,4 in active disease and 12,2 in remission.
- Overall work impairment related to patients’ paid work (absenteeism and presenteeism) amount was 18.8% for CD and 19.0% for UC patients. The percentage was more then two times higher in active disease( 27,7 % of working time) than in remission (12,9 %). The lowest work impairment was observed in Greece (14,5%), the highest in Poland (25,5%).
- The biggest difference between overall work impairment between respondents with active and inactive disease was observed in Hungary (24%), the lowest in Greece (2,6%) while the differences in Euro were the highest in Belgium and Italy (~12 000 Euro) and the lowest in Bulgaria (~3000 Euro).
- Daily activity of patients with IBD was impaired by more than one third, while in active disease by a 51% and in remission by 22% respectively. The highest impairment was observed in Belgium (45,9%), and the lowest in Denmark (27,9%).
- Percent work time missed due to IBD (absenteeism) of informal carers IBD patient in active disease was calculated on 10 hours per months while in remission on two hours. The annual cost of informal care varied from almost 12 000 Euro in Italy to less than 2000 Euro in Czech Republic and Poland. This differences can be only partially explained by different cost of labor (unit costs).
- Preliminary statistical models indicated that the indirect costs related to patients’ paid work (absenteeism and presenteeism) differed by: disease severity, country of residence, patient’s age, IBD type (with higher presenteeism in UC), current biologic treatment as indicator of more severe course of disease. Other analyzed variables (sex, place of residence, age of diagnosis, comorbidity, previous surgery) shows not correlation with indirect costs.
- The costs of informal care differed by disease severity, country of residence (p<0.001) and also patient’s age and any comorbidity.
The final results should be ready by end of March 2020.
The Invisibile History
Media awareness raising campaing explaining what it´s like to live and work with the disease. The campaign also gives practical adivse to employers and highlights the taboo around talking about the disease to employers.
United Kingdom (Crohn's or Colitis UK):
EMPLOYMENT AND IBD: A GUIDE FOR EMPLOYERS.
A guide intended to help employers and managers understand what it means to have Crohn's or Colitis. It also considers the legislation relevant for managing people with such long-term health conditions in the UK.
Crohn’s, Colitis and Employment - from Career Aspirations to Reality
A stuy highlight the overlapping links between the nature of IBD, the individual with IBD and the support offered to them by their employer and wider stakeholders in regards to their working life.
In addition, another factor which delayed the program was the fact that many patients are entitled to government allowances, depending on their financial or health condition. These allowances, which are lower than the offered salary by the scheme, are temporarily interrupted during their employment within the scheme. This creates scepticism and inhibits patients from applying.
The above problems caused delays on the first scheme, but this has improved in the second scheme, as great efforts were made to raise awareness among employers of the benefits accruing to them by outlining the philosophy of the scheme, and encouragement of our patients to join the labour market, thus mitigating their social exclusion.
Another interesting activity was the participation of our Vice President, on behalf of the Cyprus Federation of Patients’ Association, in the ‘EPF Task Force on Discrimination in the Workplace and on the Employment Market’. The aim of the Task Force was to develop a set of tools to promote better inclusion of patients with chronic and long term conditions in the workplace. The duration of the operation of the task force was more than a year, with teleconferences every 2 months and the results were very useful to EPF who include in their strategic plan non-discrimination and equal treatment for patients in education and employment.
The IMPACT study was a joint project of EFCCA and its national member associations. It was launched in November 2010 and closed in August 2011.The main aim of the survey was to obtain an international perspective of the impact of IBD on patients’ lives. The survey has received wide recognition from the scientific community and its poster presentation at the ECCO Congress in 2012 was awarded a "poster of distinction ribbon”.
France (Afa RCH Crohn)
Enquête vie professionnelle et MICI
A national survey involving 1126 participants and carried out by Afa RCH Crohn in order to understand how IBD patients are integrated in the employment market in France. The results of this study are quite revealing of the problems encountered by the patients in the workplace, which led AFA to reinforce its activities on this theme. A summary of the study is available in English in the EFCCA Magazine (issue1, 2017) on page 22.
Study on the economic burden of IBDs
The economic burden of IBD in Italy has been carried out in collaboration with the Alta Scuola di Economia e Management dei Sistemi Sanitari at the University Cattolica del Sacro Cuore in Rome. The survey involving 2426 patients estimates for the first time the average annual cost that IBD patients must pay out of pocket.We Care Project
WE Care is a project created by AMICI in collaboration with the University Cattolica del Sacro Cuore in Milan. Presented The project aims at to define the quality of care for people suffering from IBD.The research led by professor Guendalina Graffigna highlighted the different perception of the patient quality of life and how it improves with a higher involvement of the patients in their treatment procedures.
The supervision of the scheme was undertaken by the Vice President of our Association who represents CYCCA on the Board of Directors of the Federation.
The result of the application of the above scheme was very satisfactory. 105 patients were employed by the end of the year 2017 and significantly, 75 of them (71%) remained permanent employees after the expiration of one year, with full benefits, thus proving beyond any doubt that most chronic patients can be usefully and gainfully employed on a permanent basis.
The success of the scheme encouraged us to ask for a new scheme, which was implemented in May 2019, the duration of which is two years’ employment and with a budget of 2 million euros. At the moment, more than 70 patients have been employed as part of this new scheme and we are already thinking of further developments once this project is completed.
The main problems we faced during the first scheme, were the following:
Hesitation of patients to apply for employment under the scheme Hesitation of employers to register in their quest for interested patients New and relevant procedures that had to be implemented by the Ministry at their citizens’ service offices
Download our communication material
SPANISH (thanks to our member Más Vida (Argentina):makeIBDwork-infographic-2020cast.png
GREEK (thanks to HELLESCC): Infographic Greek.png
PORTUGUESE (thanks to Ana Sofia Correia and APDI): makeIBDwork-infographic-2020PORT.jpg
HUNGARIAN (thanks to MCCBE): makeIBDworkinforgraphHU.jpg
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