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

 
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

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