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The EPDA launches “unique” Consensus Statement

22 November 2011 - London

Press release

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The EPDA launches “unique” Consensus Statement – a guideline to help policymakers take the positive steps needed to improve the lives of the growing number of people affected by Parkinson’s disease and to reduce its “unsustainable” €13.9 billion annual bill

The European Parkinson’s Disease Association (EPDA) has launched The European Parkinson’s Disease Standards of Care Consensus Statement, which describes for the first time how people with Parkinson's disease should be managed. The document also suggests an optimum management model, which, if implemented by policymakers, would improve standards of care across Europe.

More than 1.2 million people live with Parkinson’s in Europe today1 and this number is forecast  to double by 2030.2 Parkinson’s is the second most common neurodegenerative disease (after Alzheimer’s disease), and its prevalence will continue to grow as the population ages. As a  result, the economic impact of the disease is enormous and has been estimated to cost European healthcare systems 13.9 billion a year.3

The Consensus Statement has been developed, reviewed and endorsed by European Parkinson’s specialists, people with Parkinson’s, carers and 45 national Parkinson’s organisations. As well as containing alarming statistics on the current cost of Parkinson’s across numerous European countries, the document also features detailed information on the importance of an early diagnosis for people with Parkinson’sand ensuring they receive access to doctors with a special interest in the disease; the need for support services and continuous care; and compliance issues. It ends with eight key areas that European policymakers need to concentrate on to effect change. Specifically, it calls on them to:

  • support initiatives that ensure people with Parkinson’s receive equal access to good-quality, specialised care across Europe

  • reduce inequalities in the treatment and management of Parkinson’s

  • improve funding for Parkinson’s research and define research priorities

  • invest in optimum treatment and maintenance strategies

  • increase public and professional awareness of Parkinson’s

  • minimise stigma and discrimination

  • strengthen the level of neurological care within European healthcare systems

  • provide adequate funding that supports the continued work of national Parkinson’s organisations.

Opportunities do exist to improve the care for people with Parkinson’s in both the treatment and management of the disease, and the Consensus Statement highlights those opportunities,” said EPDA president Knut-Johan Onarheim. “It is a call to action for policymakers to change the status quo and realise that early and appropriate pharmacological intervention can result in positive outcomes for society. It has been shown to not only reduce the economic impact to both the individual and to society but also enable people living with the disease to remain in the workplace for longer, thereby improving their quality of life and contribution to society.”

The need for a Parkinson’s Consensus Statement was identified following initial data from the EPDA’s Move for Change campaign, a three-year pan-European survey (which began in April 2010) that asks people with Parkinson’s what it is like to live with the disease in Europe today. The results from the first year – which revealed some alarming evidence that inequalities exist – were published in a special report in the October issue of the European Journal of Neurology.4

The Consensus Statement is unique,” said ex-MEP and EPDA patron John Bowis OBE. “Inspired by real-life accounts from the people who live with this challenging illness every day – and created by Parkinson’s experts with help from people with Parkinson’s – it is the first document of its kind to support and encourage the drive for equality and optimisation of Parkinson’s treatment and management at both a European and a national level. It needs to be supported at the highest level.”

To showcase the launch of the Consensus Statement and the results from the Move for Change campaign – and also to help raise the profile of Parkinson’s with policymakers – the EPDA held a meeting in the European Parliament on 22 November, entitled ‘Chronic diseases in an ageing population – a spotlight on Parkinson’s disease’. Those present at the event – which was hosted by MEPs Linda McAvan and Frieda Brepoels and moderated by Bowis – included two high-profile European Commission officials in public health and health innovation policy, Maria Iglesia-Gomez and Paul Timmers.

There has been little progress in the definition of parameters of good-quality care in Parkinson’s disease – until now,” said Iglesia-Gomez. “The Consensus Statement proposes practical strategies that can help improve Parkinson’s standards of care across Europe. Such a document could not be more timely for our ageing European population and fits very well with the European Commission’s current focus on active and healthy ageing.”

McAvan agreed, adding: “The Consensus Statement is a much-needed document. It succinctly and clearly paints a very stark picture: that Parkinson’s is a disease that needs to be given greater visibility and awareness. It provides clear direction on the positive steps that can be taken by policymakers to improve the treatment and management of this chronic neurodegenerative condition.”

Brepoels also commented: “A parliamentary event such as this is an excellent platform to get the message across to a wider audience. It also helps to identify MEPs that have a special interest in this serious issue and establishes how this kind of support can be taken forward into action.”




References

  1. P Andlin-Sobocki et al, European Journal of Neurology 12 (Suppl 1) June 2005

  2. E R Dorsey et al, ‘Projected number of people with Parkinson’s in the most populous nations, 2005 through 2030.’ Neurology (2007) Jan 30;68(5):384.6

  3. Gustavsson,  A, et al, ‘Cost of disorders of the brain in Europe 2010, Eur.’ Neuropsychopharmacol (2011)

  4. The Move for Change report in the European Journal of Neurology can be downloaded at http://onlinelibrary.wiley.com/doi/10.1111/j.1468-1331.2011.03532.x/abstract





Notes to Editors

Parkinson’s disease

  • Parkinson’s disease is a progressive, chronic and complex neurodegenerative disease that has no cure.

  •  It affects all aspects of daily living and is the most common neurodegenerative disease after Alzheimer’s disease. 

  • The incidence of Parkinson’s is forecast to double by 2030, primarily as a result of the ageing population. 

  • Treatment and management is available for a number of aspects of the disease but is not yet accessible to all. 

  • Ongoing research has resulted in significant improvements but more is needed to delay, stop or even reverse the disease.

  • Parkinson´s disease is predominantly characterised by problems with body movements – known as motor symptoms. These symptoms include tremor, rigidity, bradykinesia and postural instability.

  • The disease is also associated with symptoms that are not directly related to movement – known as non-motor symptoms. These symptoms include sleep disturbances, constipation, the loss of sense of smell, depression, sexual dysfunction, anxiety and lots more.  



Further Information



Contact Information


Please contact: Sarbjit Kunar
  • Tel: +41 22 879 85 03 

  • Mob: +41 79 720 0921

  • Email: skunar@webershandwick.com


The European Parkinson’s Disease Association (EPDA)

The EPDA is the only European Parkinson’s disease umbrella organisation.  A non-political, non-religious and non-profit-making organisation, it represents 45 member organisations and advocates for the rights and needs of more than 1.2 million people with Parkinson’s and their families.

The EPDA’s vision is to enable all people with Parkinson’s in Europe to live a full life while supporting the search for a cure. In order to achieve its vision, the EPDA aims to become the leading voice for Parkinson’s in Europe – providing innovative leadership, information and resources to national Parkinson’s associations, European policymakers, the treatment industry, healthcare professionals and the media. In achieving these aims, the EPDA hopes to raise the profile of Parkinson’s and enable people living with the disease to be treated effectively and equally throughout Europe.