A Moving New Parkinson's Disease Campaign Aims To Stamp Out Inequalities In Treatment And Care Across Europe

Main Category: Parkinson's Disease
Article Date: 27 Aug 2008 - 0:00 PDT

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The European Parkinson's Disease Association (EPDA) urged European decision makers and politicians to end inequalities in care and treatment access for people with Parkinson's disease.

The plea was made during the launch of EPDA's latest campaign, 'Parkinson's is visible, make it livable', intended to visualise the daily challenges faced by those with Parkinson's, increase people's knowledge and understanding of the disease and influence decision makers.

EPDA's campaign follows new research* highlighting the extent to which everyday activities are negatively impacted by Parkinson's. The research, Real Life, Real PD, conducted by EPDA among 3,000 people living with the disease, showed that eating, dressing, washing and speaking are some of the daily tasks significantly affected and that the majority of people do not feel in control of their symptoms. Almost half of all respondents described how their depression and mood swings placed an added strain on relationships with partners and families.

Speaking at the event, EPDA president Stephen Pickard commented, "Parkinson's is a costly disease and places a huge burden on carers and society as a whole. We need governments to realise that taking action to reduce this burden by ensuring people receive the best care and treatment available makes the most economic and social sense."

He continued, "There are nearly 1.2 million people living with Parkinson's in Europe, and with an ageing population this figure is set to rise. It's time to address inequalities in care and treatment of the disease and improve the lives of those affected by Parkinson's now and in the future."

The campaign was launched at the 12th Congress of the European Federation of Neurological Societies (EFNS) in Madrid where delegates heard from EPDA representatives and watched a series of emotive short films featuring people with Parkinson's battling with everyday tasks such as shopping and crossing the road.

The campaign, 'Parkinson's is visible, make it livable', is the first step towards eradicating inequalities in care and treatment access across Europe and a summit meeting is scheduled to take place in Brussels next year where MEPs will discuss the practical steps required to improve management of the disease.

Campaigner, Tom Isaacs (40), who has lived with Parkinson's disease for 12 years, commented at the event, "It always amazes me how Parkinson's is so visible socially and yet seemingly invisible to society. This is a ruthless condition and help is needed throughout Europe. This EPDA initiative is crucial. We need to increase understanding. We need to raise the profile. We need people not just to see, but to act."

To watch EPDA's short films and find out more about the campaign, please follow this link: http://www.parkinsonsdecisionaid.eu.com/awarenessCampaign/2008/video.asp

  *The full research report has been submitted for publication to the International Journal of Clinical Practice and is currently under review

Real Life Real PD Survey

The Real Life, Real PD Survey, a joint project between EPDA and GlaxoSmithKline, was conducted in the following European countries: Andorra, Armenia, Austria, Azerbaijan, Belgium, Bosnia, Bulgaria, Czech Republic, Denmark, Estonia, Faeroe Islands, Finland, France, Georgia, Germany, Ireland, Italy, Lithuania, Luxembourg, Netherlands, Norway, Portugal, Slovakia, Slovenia, Spain, Sweden, Switzerland, Turkey, Ukraine and the UK

Close to 3,000 people across Europe participated in the survey, to assess the real-life everyday concerns of people living with PD. Of these 55 percent were male; 45 percent were female, and the average age was 63 years. Over half of respondents had lived with PD for over 6 years. Respondents were recruited via local (EPDA) member organisations in each country. Own-language questionnaires were available to complete and submit online via the EPDA website.

About EPDA

The European Parkinson's Disease Association (EPDA) is a non-religious, non-political and non-profit making organisation concerned with the health and welfare of people living with Parkinson's disease and their families and carers. Founded in June 1992 in Munich with a membership of nine European Parkinson's patient organisations, the EPDA currently has a membership of 40 organisations across Europe (active members able to vote at the annual General Assembly), see http://www.epda.eu.com/members.

EPDA aims to ease the lives of people with Parkinson's and their families and carers by promoting a constructive dialogue between science and society, and by encouraging and supporting the development of national PD organisations.

European Parkinson's Disease Association