Patient power growing for arthritis patients in Europe
13 June 2001
EULAR 2001, the annual congress of the European League Against Rheumatism, held in Prague, Czech Republic, from 13-16 June, gave arthritis patient support organisations the chance to present their latest strategies. myDr attended EULAR to bring you the latest update on patient power.
An informed patient is a patient more likely to lead a better quality of life and make more of a contribution to society. That’s the thinking behind the patient support initiatives taking place with arthritis and rheumatism patient organisations in Europe.
One of those initiatives is the People with Arthritis/Rheumatism in Europe (PARE) Manifesto, a pan-European scheme that aims to ensure maximum quality of life for the 103 million Europeans affected by arthritis and rheumatism. Here in Australia, one in 5 of us will be affected by some form of rheumatic disease at some time in our lives, so the initiatives in Europe are worth keeping an eye on.
PARE Manifesto
The PARE Manifesto has 10 key objectives.
- To raise the profile of arthritis/rheumatism with European policy makers. (Arthritis/rheumatism is the term that has been adopted to encompass the many conditions covered by the medical field of rheumatology.)
- To assert the contribution of people with arthritis/rheumatism.
- To encourage change in the way services are delivered in health, education, employment and social services.
- To provide a framework for addressing the social model of disability.
- To support work for greater social inclusion.
- To provide a consensus for legal support of people with arthritis/rheumatism.
- To be a tool that national patient organisations can use to develop their identities and programmes.
- To provide consistent messages and reinforce points for campaigning at European and national levels.
- To be a vehicle to discover the true costs of arthritis/rheumatism.
- To provide a framework for the development of best practice.
Speaking at the recent EULAR 2001 congress, Michael Bernardy, chair of the PARE Manifesto Steering Group, said: ‘For the first time, patient organisations in Europe are speaking with one voice to achieve our core goal: to improve the quality of life for millions of Europeans living with arthritis/rheumatism.’
To help achieve these aims, the Manifesto is calling on policy makers, service providers and researchers to:
- raise public awareness of the scale and impact of arthritis/rheumatism to ensure there is sufficient high-quality information, and to portray people with arthritis/rheumatism as active members of society, not as victims;
- fund programmes that draw on the skills of people with arthritis/rheumatism;
- involve people with arthritis/rheumatism in policy development and in determining relevant medical and social research priorities;
- develop and recognise national and international arthritis/rheumatism organisations;
- provide good quality health and community services;
- ensure doctors and health professionals focus on treatments and support that enhance independence, by designing services that acknowledge a mutually respectful relationship between patients and professionals;
- strengthen laws and regulations that ensure equal opportunity; and
- provide fully accessible education and training programmes.
What has been achieved so far?
In the 12 months since the PARE Manifesto was launched at the 2000 EULAR congress in Nice, France, there have been several breakthroughs that indicate patient power is growing stronger in Europe.
- The PARE Manifesto was launched at the European Parliament in Brussels, Belgium, in January 2001.
- It has been endorsed by a large number of national patient organisations throughout Europe as well as by a number of high-profile organisations and individuals, such as Members of the European Parliament.
- It has been translated into English, French, German, Slovenian, Spanish and Polish and plans are under way to translate the Manifesto into Dutch, Icelandic, Italian and Swedish.
- The PARE Manifesto Steering Group and Secretariat has been established in Bonn, Germany. Members of the Steering Group are all representatives from the 3 international organisations involved in developing the Manifesto: Arthritis and Rheumatism International (ARI, the members of which are lay organisations whose members are mainly people whose lives are affected by arthritis/rheumatism); the International Organisation of Youth with Rheumatism (IOYR); and the European League Against Rheumatism (EULAR) Social Leagues.
- A network of national PARE Manifesto representatives across Europe has been established.
- An audit has been conducted among patient group representatives in 12 countries.
Mr Bernardy said: ‘We are enthusiastic about the progress we have made with the PARE Manifesto over the past year.
‘However, this is still only the beginning and we have much work to undertake together to bring about the actions called for in the Manifesto.’
Will Australia have a patient manifesto?
Bridget Kirkham, CEO of the Arthritis Foundation of Australia, will be representing Australia at the forthcoming ILAR (International League of Associations for Rheumatology) congress, to be held in Edmonton, Canada, in August.
Ms Kirkham told myDr that the development of an international patient manifesto, likely to be developed by Arthritis and Rheumatism International (ARI), would be high on the agenda for discussion.
Patient groups: preventing isolation
The PARE audit of 32 arthritis/rheumatism patient group representatives from 12 European countries was under discussion at the recent EULAR 2001 congress.
The findings of the audit, which was conducted in March-April 2001, in conjunction with a recent European survey of 4130 patients, has highlighted concerns that many people with arthritis/rheumatism are uninformed and isolated.
Mr Bernardy, who was diagnosed with rheumatism-juvenile chronic polyarthritis (in which a young person is affected in several joints) when he was 10 years old, said: ‘We have experience that tells us that when people with arthritis/rheumatism are provided with information and support, it empowers them to make decisions about their condition and their life.
‘An informed and educated patient can lead a better quality of life and make more of a contribution to society.
‘Patient groups can play a significant role in helping to provide support and information, yet the audit indicates that people are not accessing these resources and in many cases are not even aware that they exist. Many people feel isolated.’
Of the 4130 patients interviewed in the European survey in April 2001, 19 per cent of people indicated they had arthritis or the symptoms of arthritis. Of these, 83 per cent indicated that they had sought medical advice for their condition, but only 1 per cent of them received leaflets about their condition or were told about patient self-help groups.
‘The audit and survey findings underscore the need to help people identify resources such as patient self-help groups,’ said 33-year-old Catherine Gibb from the UK, a member of the PARE Manifesto Steering Group and of the International Organisation of Youth with Rheumatism.
Speaking at the EULAR 2001 congress, Ms Gibb recounted how she felt when she was first diagnosed with ankylosing spondylitis (a type of arthritis affecting the spine, resulting in progressive stiffening of the joints and ligaments) when she was a 20-year-old student.
She said: ‘I was in a lot of pain, I felt lonely and I was facing an uncertain future. I felt quite isolated and often tried to hide the fact that I had arthritis. My doctor didn’t give me any information about my condition or put me in touch with anyone who could help me. When I attended the rheumatology clinic, I was usually surrounded by people with grey hair, so I felt very alone. Learning about a patient group and meeting other young people with arthritis was a major turning point for me.’
Doctors and patients
Doctors play an important role in keeping patients informed and the doctor/patient consultation is a significant opportunity for people to become informed of the resources and support that are available.
Ms Gibb said: ‘We must help doctors to understand the importance of directing arthritis/rheumatism patients to information resources and patient groups. We must also encourage people to ask questions about their condition and learn to identify available support and information.’
Last Reviewed: 04 July 2001
