Sunday, 06 July 2008

Business Plan

 

Working to Achieve Our Objectives

Our aims & objectives can be broken down into key points of action.

Supporting these objectives and having a grasp of the key issues which stand in the way of their achievement, are held in common by the members of the Association and many of their partners.

The specific ways in which the issues affect individuals, and the details of solutions may vary by country, and even within individual nations across Europe. Nevertheless, the enormity of the challenge and the pressure on both public and private resources, demand that EPDA uses its energies and resources towards prioritised, shared goals. The EPDA will develop initiatives with constituent organisations and with other partners, to the maximum extent possible.

This business plan is a necessary step in the above process. It is intended to become the "road map" for concrete actions the EPDA is already taking and will pursue in the future. Of necessity, it will balance ambition with resource. Resources will need to be mobilised from organisations and people who share EPDA's vision for social and economic inclusion of those with Parkinson's disease.

 

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Key Issues

While considerable work has been done in analysing issues facing people living with Parkinson's disease and their families, which impact their quality of life, it is clear that categorisation is somewhat arbitrary. Key areas are identified below, with some explanatory comment, including the fact that issues may share common features and solutions. Which is/are tackled first will need to be agreed, based on assessed beneficial impact and to what extent/when resources may be obtained and deployed. It is essential that, by working together, the EPDA members will develop clear priorities for action.

The "telling" of the diagnosis has been shown to have a major effect upon the management of Parkinson's. The EPDA is committed to working with medical, health, and social care professionals in order to achieve best practice in this area. This involves early and accurate diagnosis, early referral to the multi-disciplinary teams and continuity of care. This also entails active participation by people in the management of their own condition.

With the universally ageing population, poly-pharmacy has massive implications for patient understanding and management of their pharmacological treatment regimes. Current issues are:

The EPDA will strive with its partners to improve the provision of relevant educational materials in order to ensure that people can make informed choices about the management of their condition.

The EPDA is committed to working towards the elimination of discrimination, which affects the quality of life of people living with Parkinson's and of their carers and families. Lack of knowledge of Parkinson's - among patients themselves, the public at large, potential employers, work colleagues, and legislators and policy makers - is a clear barrier to managing the condition effectively and contributes to patients' low self-esteem and the widespread discrimination, which attaches to Parkinson's.

Replacement of negative coverage by positive and factual material in influential media and counteracting mis-information and stereotyping is a key aim of the EPDA to make significant impact on discrimination.

Differential access to employment beyond that implied by capability is a major issue, potentially influencing every aspect of the person's life. It is also a major loss of opportunity to the national and European economies. This is particularly so in areas where there are key skills shortages and changing labour demographics. The increased use of tele-working, and possibilities brought about by IT developments represent increased opportunities to overcome barriers to employment. The EPDA is committed to working with others to remove inappropriate barriers to employment.

All of the foregoing, singly or in combination, currently has a detrimental affect on the ability of people to maintain an independent life which impacts on the capacity of carers, family, and social support services to meet their needs and may result in premature and costly institutionalisation. This area represents a major opportunity for the EPDA and its partners to positively affect personal quality of life and the cost-benefit to society of managing this condition.

In many locations over-dependence on voluntary care is a key issue caused by lack of appropriate, consistent and affordable institutional arrangements. The majority of carers are female, increasingly torn between professional and caring roles; hence even these arrangements are at risk. The inevitable collapse of this voluntary structure represents a major incremental cost to national economies.

The EPDA is committed and is convinced that the expertise of people living with Parkinson's must be sought and acted on in developing and implementing both socially responsible and cost-effective solutions of the above.

 

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Emerging Strategies & Implementation

Successful implementation of strategy and demonstrating impact through practical measurable actions is crucial to EPDA's developing credibility as an added value body supporting and complementing the efforts of its constituent organisations.

Key indicators for early actions with potential for significant positive impact and which are potentially affordable are those which:

 

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Projects in development [2008 - date]

Projects, which have been identified and are under development, include:

 

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Publications (for healthcare professionals)

 

 

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Multidisciplinary Conferences

1994 - Glasgow & Peterborough, UK

1996 - Leverkusen & Stockholm

1997 - Copenhagen

1998 - Barcelona

1999 - Krakow, Netherlands & Prague

2000 - Vienna

2001 - Kiev & London

2002 - Ljubljana

2004 - Lisbon

2005 - Dublin

2006 - Ljubljana

2007 - Stresa

2008 - Zagreb


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Eastern European Roadshows

2007 - Hungary

2008 - Poland


 

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Completed Projects

 

Further information