Patient organisations’ initiatives

Many patient organisations have taken action to advocate for the rights of patients in the workplace, combatting experienced stigma and discrimination in the workplace and advocating for better inclusion of people with chronic conditions.

Examples of various initiatives by EPF members are listed below. They show the important role patient organisations have in advocating against discrimination, in carrying out research to better identify the obstacles and solutions, and in taking concrete initiatives.

Awareness raising and advocacy

The European Federation for Allergies and Airways Diseases Patients Associations organised a workshop on COPD at work. The outcomes of the workshop showed that with adequate support from employers, people with chronic conditions can continue working. It demonstrated the need to work across disease areas, as high-quality care, development of self-care, and measures to empower patients can contribute to their ability to remain at work. In July 2013, Alzheimer Europe, the European Multiple Sclerosis Platform, and the European Parkinson Diseases’ Association co-organised the panel discussion “The Challenges of Neurodegenerative Diseases in the Workplace: what can be done at EU level?” at the European Parliament. These examples provide further details on specific challenges in various diseases area.

The organisation the ALLIANCE Scotland launched a campaign to promote employability of people with long-term conditions, called “My skills, my strengths, my work”. This campaign aims to change the perceptions of employees with chronic conditions, particularly amongst employers. Other campaigns have been carried out by patient organisations, for example “Make LUPUS Work”, and Mental Health Europe’s campaign “Tried and Trusted” around employment of young people with mental health conditions and published a video on the individual placement and support method.

Another recent initiative to improve access to employment for those affected by neurological disorders and chronic pain conditions was the #MakeWorkWork campaign, an initiative of the European Federation of Neurological Associations [EFNA] and Pain Alliance Europe [PAE], co-chaired by MEP Interest Group on Brain, Mind and Pain.

Mental Health Europe promotes the economic and social case for good mental health in the workplace and the inclusion of persons with psychosocial disabilities in the labour market. MHE is also an active member of the European Alliance for Mental Health – Employment & Work (EUMH Alliance). The EUMH Alliance is an informal coalition of European organisations, the main aims of which are to promote mental health and well-being in the workplace, to advocate for equal access to the labour market for all people experiencing mental ill health and to stimulate policy developments at EU level in these domains.

In October 2013, The European Federation of Crohn's and Ulcerative Colitis Associations (EFCCA) organised an awareness-raising and advocacy event in the European Parliament on the topic of employment of people with Inflammatory Bowel Disease (IBD), entitled ‘From EU citizenship to IBD - zenship’.

In 2017, the European Patients’ Forum’s Youth Group developed a video entitled ‘Mind the invisible – Stop discrimination’ with the aim of raising awareness of discrimination and chronic conditions as well as a factsheet on discrimination and stigma in education and in employment.


Gathering information

In 2013, GAMIAN-Europe conducted a survey on mental illnesses at work.

The European Federation of Neurological Associations has published a book of evidence which contains several patients’ testimonies on work, as well as good practices.

France Assos Santé publishes a report every year analysing the inquiries received on their helpline. Several chapters provide information on the situation in the workplace of people with chronic diseases and people with disabilities in France.

The European Federation of Neurological Associations (EFNA) carried out research on patients’ experience of stigma at work. The survey asked patients whether they felt that their condition led to discrimination in the workplace, decreased their chances of promotion at work or whether their condition was understood by colleagues and managers. Results indicate that gender, age, disease duration, educational level and perceived pain has an impact on experienced workplace stigma.

The results tell a story of social and workplace stigma and of reduced well-being, but also reach out for the help of clinicians and suggest concrete actions: having a higher recognition of neglected diseases, such as CFS, or misunderstood diseases, such as migraine or RLS, might reduce the perception of stigma; and involving the employment sector would build a broader care approach and lead to stigma reduction.

In 2013, The European Federation of Crohn's and Ulcerative Colitis Associations (EFCCA) carried out a pan-European survey. The primary objective of the survey was to obtain an international perspective of the impact of Inflammatory Bowel Disease (IBD) on patients' lives, including the impact of IBD on quality of life as well as on additional aspects such as employment as well as access to health care, education, employment, and relationships. Results indicate that the majority of respondents felt stressed or pressured about taking time off, and many had experienced unfair complaints or discrimination at work. Such comments could perhaps be prevented with improved IBD awareness.

Initiating projects and research

The European Multiple Sclerosis Platform (EMSP) lead a project called “Believe and Achieve” which establishes partnerships with European businesses to provide young people with multiple sclerosis (MS) opportunities to work in a supportive environment. The project launched offers for 17 paid internships in various EU countries.

The European Multiple Sclerosis Platform has also launched a European Pact for Employment campaign, directed at businesses, to encourage their commitment to providing sustainable employment for people with MS.

The Italian federation of rare diseases put in place the project "Fantasia" Restaurant in Venice: it is designed to give dignity to people with disabilities, contributing to their working integration and professional training. It gives people with disabilities a place to socialise and a testing laboratory to try new experiences. The goal is to provide job placement to people with disabilities, promote a working culture that integrate people affected by rare diseases.

In Cyprus, the Pancyprian Federation of Patients Associations and Friends have succeeded in the implementation, by the Ministry of Labour in co-operation with the European Social Fund, of the first phase of an employment programme for 100 people with chronic diseases, by providing a subsidy of 75% of the cost of employment of these employees for one year. Upon completion of the programme, we will evaluate how many of these 100 people will finally be hired, by their subsidised employer, on a permanent basis, which is the ultimate goal of the programme. A second phase of the programme has begun with the target of employing another 100 people with chronic conditions, but this time for two years. This aim is to educate employers on the need to employ people with chronic diseases on a permanent basis, regardless of the existence of a subsidy programme or not. Seminars will be organised in cooperation with the Cyprus Chamber of Commerce and Industry (CCCI) which is the Union of Cypriot Businessmen and the Cyprus Employers and Industrialists Federation (OEB) which is the National Employer Organisation. 

Participating in policy making

The Flemish Patients Platform (VPP) is part of the ‘Gebruikersoverleg Handicap, Chronische Ziekte en Arbeid’. It reunites different user-organisations active on work and chronic diseases/disabilities. It represents the voice of the user in several policy bodies in Flanders, such as the diversity committee of the Social and Economic Council of Flanders, which represents trade unions and employer associations. This body has made a list of actions that must be executed in the next few years to achieve a more inclusive labour market, including education and transition to a job. Four ministers (Work, Education, Welfare and Social economy) have signed up to work on the execution of these actions and will try to realise them by 2020.


Other sections on this topic:

Working with a chronic condition

Legislation summary - How is discrimination addressed in EU legislation?

Guides and tools developed by patient organisations (for employers and patients)