Earlier this year, several ENFA members attended the 22nd EULAR Annual European Conference of PARE, held in Prague, Czech Republic between April 5th and 7th, 2019. Here, ENFA Secretary Eva Deurloo, representing Fibromyalgiförbundet, Sweden, provides a summary of topics discussed during the conference.
Hosted by the Czech League Against Rheumatism, the 22nd Annual European Conference of PARE (People with Arthritis/Rheumatism in Europe) saw the launch of Time2Work, a new focus for the European League Against Rheumatism (EULAR) Don’t Delay, Connect Today campaign. Time2Work aims to put the spotlight on work and rheumatic and musculoskeletal diseases (RMDs), whilst still embracing the campaign’s key principles of prevention, early diagnosis and treatment.
The President of the European League Against Rheumatism (EULAR), Professor Johannes W. J. Bijlsma, welcomed participants and declared the conference open. The first speaker was the Czech Minister of Health, Adam Vojtech. It is estimated that 70,000 people in Czech Republic suffer from rheumatoid arthritis (RA), whereas in some countries, the prevalence can be as high as 10 to 15%. Vojtech described some of the work supported by the government that benefit people with RA in Czech Republic. One example is that they have provided over 40 specialist centres that focus solely on administering biological drugs. Vojtech explained that the cost of this type of treatment is an economic burden for all countries. Biosimilars represent an alternative and the best way forward. Down the line, offering Biosimilars wil lead to lower prices in biological drugs. The ambition is to make biological treatment available to everyone with the disease, not only for the most serious cases as it is often the case today.
Keep active and stay in work
Dr Jakub Zavada, a rheumatologist from the Czech Institute of Rheumatology in Prague then explained the principles of treatment of RA, where one of the most important goals is to keep patients active and in work. If the minor activity of the disease is controlled, the ability to work is not affected but more disease activity leads to absenteeism and ultimately loss of work. Presenteeism was explained as being at work while ill and where the performance is affected adversely by the disease.
The Czech ATTRA registry captures 95% of people with RA, which offers the opportunity to interpret important statistics. In order to assess the economic consequences of offering anti-TNF drugs to people with RA in relation to work productivity, a study was carried out. A short questionnaire (WPAI; Work productivity and activity impairment) was used to assess absenteeism and presenteeism due to ill health. After people were treated with anti-TNF drugs, the data shows that overall work impairment improved by over 25% in the first year of treatment. The people who benefitted the most from the treatment were younger and those with most aggressive disease manifestations in the beginning. Conclusively, anti-TNF treatment over one year significantly improved workability in patients and is therefore important for society as a whole. The investment in the powerful but expensive drugs reduce health-related cost in the form of loss of productivity. Most importantly, the treatment which enables people to work, gives huge personal, financial and psychological benefits.
Czech Society of Rheumatology
Jiri Vencovsky, President of the Czech Society of Rheumatology, told us that the society was established 50 years ago when the country was still Czechoslovakia. When the countries split, two separate societies were formed but they remain friendly and still have overlapping activities. They have an extensive member register which enables them to track disease related activity of patients. The Society have launched webpages with focus on specific diagnoses to offer reliable information for patients.
Peter Boyd from EULAR Young PARE told of a workshop the previous day for people under 35, with the topic of how PARE can help young people with RMDs to get into, get back to, or continue work. Boyd speculated that presenteeism could cost more than absenteeism. He also stressed the psychological benefits for young RMD sufferers of being able to work.
My ideal employer
A person with an RMD who is a wheelchair user, described the situation from a patient´s perspective. He works as an architect and as a volunteer for various organisations. From personal experience, he emphasised the importance of accessibility at work. The employer must look over the workplace and adapt it so that the employee can return. There are great benefits to invest in protecting the health of the workers. Money spent on prevention of work-related ill-health is never a waste as a happy employee is a productive employee! There should be modifications to ensure that all the employees have the same level of comfort regardless of their physical (dis)abilities. It´s as important as offering a good salary. An example of modifications is ensuring the ergonomically best posture for the worker carrying out the different tasks.
EU-OSHA stands for Occupational Safety and Health Agency. Sarah Copsey from EU-OSHA explained how the agency aims to protect the health and safety of people at work by improving working conditions for people in the EU. They regularly collect, analyse and disseminate data, while sharing and exchanging relevant information and raising awareness of issues through campaigns. The role of the agency is to promote collective and individual measures, ensuring health and safety for a diverse workforce. Copsey told us that many measures are cheap, simple and often benefit, not only the affected person, but the whole workforce. There should be a universal model for inclusivity in the workplace and EU-OSHA runs “Healthy Workplace” campaigns with this motto as well as encouraging national initiatives and support activities by individual companies. Resources for employers can be downloaded from the EU-OSHA website.
There is EU legislation governing the adaptation of workplaces to benefit the employees and each country must have national laws protecting the health of the worker. However, implementation is difficult, especially for small businesses. To overcome this, there should be national support to help small businesses to make risk assessments and get the necessary help with adapting workplaces.
Strategies for activities
In a panel discussion about the strategies for future activities, participants agreed that it is important for people with RMDs to be able to work in order to be part of society. The more expensive biological drugs still give more than they cost as they contribute to bringing people to work. This has to be emphasised to persuade policymakers and politicians to offer the treatment to more people living with such diseases. Since it is largely a political and economic issue, the cost benefit in the workplace has to be proven. Statistics demonstrate that If you are able to diagnose and treat people within two months of them becoming unwell, they have a better chance of keeping their job. If you wait, they risk losing their jobs. The EULAR campaign “Don’t Delay, Connect Today” aims to raise awareness of this problem. The key message is that early diagnosis is vital and will lead to less people without work and more people enjoying work.
Rehabilitation and vocational rehabilitation are important issues in the treatment of RA and other RMDs, including fibromyalgia. There are many different disciplines involved in occupational rehabilitation, including physiotherapists, occupational therapists, psychologists, and medical doctors, to name but a few.
RMDs affect over 120 million people within the European Union. It’s the biggest cause of sick leave and premature retirement among the workforce. Health promotion and prevention at the workplace is therefore important. Some examples of adjustments including applying ergonomic principles at the workplace and ensuring a healthy balance between activity, pacing and rest.
There is clear evidence for vocational and occupational rehabilitation and also for non-pharmacological treatments in RA and other RMDs, such as physical activity and occupational therapy. Patient activation is important as well as psychological interventions. Return to work should be the clinical outcome or treatment goal in rehabilitation, which should complement existing treatments agreed upon by the patient and their healthcare team.
The participants at the conference were subsequently divided into subgroups to delve into various chosen subject areas in workshops led by experts. Examples of the workshops offered were:
- Working with policy makers
- Employers and Trade Unions
- The value of work
- Occupational rehabilitation
- Effectively designing and presenting a poster
- How to care for informal carers needs
- Finding the right job at the right time
- Entitlements and knowing your rights at work
- Working with pharmaceutical companies
- Young PARE ‘Transitions in Life’.
The workshops consisted of case studies and group discussions, which was a valuable opportunity to share experiences from different countries. At the end of the conference, the respective workshop-facilitators presented a summary of results from the sessions.
Some of the take-home-messages from the summary (in no particular order) were that:
The main challenges for carers of people with RMDs is guilt, lack of comprehension/understanding, confusing roles, knowing how to ask for help and how to ensure self-preservation. The solution is good communication between the carer and the person who is being taken care of. The carer needs educational support and information. Organisations can contribute by providing education in every aspect, including host campaigns, webinars, weekends for caregivers and a self-management app, for example.
There should be written material produced to support people with RMDs and employers to ensure a successful return to work, or preferably how to remain at work. There should be information booklets about your entitlements, which are different for each country according to their legislation.
It’s important when working with pharmaceutical companies to have a good knowledge of the organisation’s ethical code and the policies governing collaborations. To present a project that you are seeking funding for, it must be a ‘win win’ situation for the pharmaceutical company with mutual benefits highlighted. Proposals should include a detailed budget, objectives and a description of the organisation. All contact should be kept polite and non-intrusive. The parties should aim to be transparent, objective and to respect each other.
There should be a comprehensive checklist for patients in their contact with doctors where subjects that are non-medical can be dealt with by another relevant health professional. Work-related questions should be included in assessments. If the doctor does not have time or doesn’t know the answer, they should point the patient in the right direction. There should be a named member of staff in the team to coordinate the care. Some countries have a Rheumatology specialist nurse, coach or co-ordinator who organises the rehabilitation process and is the “spider-in-the-web” for all of the patient’s needs.
The EULAR Standing Committee of PARE gave out awards at the end of the conference. Neil Betteridge, former Vice President was given a special award. He is currently the leader of the EU Affairs Group for EULAR. The second special award went to Esmé Newton-Dunn, who has worked above and beyond her externally-appointed role to ensure the annual conference is a success – she is an inspiration to many others!
The Young PARE award was given to a project which aimed to improve the lives of young people with RMDs. The winner in this category was Scotland Versus Arthritis, a national charity which works with people under 25 on activities to promote self-management of their disease.
In order to reach the goal of enabling more people with RMDs to work, there needs to be efficient communication and collaboration on different levels between policy makers, employers, health professionals, patient organisations and patients. We should use and share available materials and make patients aware of their rights. At the moment, there seems to be a difference in the way different countries handle vocational and occupational rehabilitation and how they implement the laws governing health and safety at work. There is clear EU legislation and all employers have a right to an accessible and healthy work environment. Great economic and social benefits come from ensuring that as many people as possible can remain active. Early diagnosis is vital to increase the chances of being able to carry on work/studies. The EULAR “Don’t Delay, Connect Today” campaign will continue to raise awareness of this issue.
Just as important, the EULAR Annual European Conference of PARE provided an inspiring and positive platform that brought together people with the same goal: to improve the lives and conditions for people with RMDs with focus on resources rather than obstacles.
To view the official conference report published by EULAR, please visit: https://www.eular.org/myUploadData/files/prague_annual_conference_report_2019_final.pdf