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SP0046 What are the needs of the individual – manifesto for and by people with arthritis/rheumatism in europe
  1. L Blauw
  1. International Organisation of Youth with Rheumatism, Hoogeveen, The Netherlands

Abstract

As people with arthritis/rheumatism we recognise that we have a unique role in pressing for the provision of adequate care, treatment and support for the more than 100 million people with arthritis/rheumatism throughout Europe.

With this goal in mind, in April 1999, several arthritis/rheumatism patient organisations met to discuss how they could work together to address their mutual concerns, challenges and aspirations. That gathering, and a number of subsequent committee and steering group meetings, have led to the development of the Manifesto for the Third Millennium, by people with arthritis and rheumatism in Europe.

Prior to this, patient groups in the field of arthritis/rheumatism had not had the opportunity to share these concerns and articulate them with one strong, united voice across Europe. There was an abundance of ideas but no resourced system to develop them and no platform from which they could be launched.

Whilst by no means an all-compassing document, the Manifesto is intended to provide a ‘Call to Action’ on those issues people with arthritis/rheumatism in Europe believe to be of the highest priority to them. As the document sets forth, they hope to establish a productive framework for collaboration between patient organisations, medical and health professions, policy makers, and others, throughout Europe: a framework that brings empowerment to people with arthritis/rheumatism and a commitment to best practice across Europe.

The Declaration is as follows:

As people with arthritis/rheumatism we declare that:

Since at least 103 million European citizens have arthritis/rheumatism, we comprise the largest part of the population living with long-term medical conditions. We share a great concern about the serious health, social and economic impacts of arthritis/rheumatism because it affects every aspect of life. The pain and disability have consequences for our families, friends, employers, government policy, and society generally. Despite this, many of us do not have the opportunity to get appropriate treatment and support. Arthritis is not prioritised in the European health agenda, and European governments do not have effective national strategies to engage effectively. This amounts to an infringement of the Universal Declaration of Human Rights. It is important to recognise and utilise the experience of those of us who have learned to self-manage our arthritis effectively. We believe that our experience and knowledge should be used as a resource for the benefit of others so that they too can enjoy a high degree of independence and a good quality of life.

To help us achieve our Manifesto for the Third Millennium we require the support of European policy makers, service providers and researchers to:

  • Raise public awareness (of the scale and impact of arthritis/rheumatism. ..)

  • Empower people with arthritis/rheumatism by funding user-led programmes (that draw on the skills of people with arthritis/rheumatism. ..)

  • Involve people with arthritis/rheumatism in policy development (...)

  • Develop and recognise national and international organisations of people with arthritis/rheumatism (...)

  • Provide prompt and good quality health and community services (...)

  • Ensure doctor and health professional awareness of arthritis/rheumatism (is focused on patterns of therapy, treatment and support that enhance our independence and autonomy as individuals with arthritis/rheumatism. ..)

  • Involve people with arthritis/rheumatism in helping to determine relevant medical research priorities and budgets, (methodologies and the communication of findings, thus establishing a comprehensive knowledge base for the planning of services.)

  • Expand research into the societal impacts of arthritis/rheumatism (by involving people with arthritis/rheumatism in all aspects. ..)

  • Strengthen laws and regulations (...)

  • Provide fully accessible education/training programmes (...)

The Manifesto is prepared by:

Arthritis and Rheumatism International (ARI) + Standing Committee of the European League Against Rheumatism (EULAR) Social Leagues + International Organisation of Youth with Rheumatism (IOYR).

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