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Charter for People with Parkinson's, 1997

On the same day as the first ever World Parkinson’s Disease Day celebration – 11 April 1997 – the Charter for People with Parkinson’s was launched. Its aim was to raise the profile of Parkinson’s and enhance the public’s awareness of the disease; it also provided people with Parkinson's (PwPs), their families and healthcare professionals with the opportunity to work together on an unprecedented scale.

The Charter is a vital document – and a unique one – for there had never been such a high-profile or officially endorsed statement of intent that demanded minimum standards of care for PwPs. Specifically, the Charter states that PwPs have the right to:   

  • be referred to a doctor with a special interest in Parkinson’s
  • receive an accurate diagnosis
  • have access to support services
  • receive continuous care
  • take part in managing their illness.

The Charter and its principles were supported by the World Health Organisation (WHO) and other notable individuals, including Pope John Paul II, Luciano Pavarotti, Princess Diana, Muhammad Ali, various UK prime ministers and other influential people from around the world.

The principles of the Charter are still incredibly relevant to the EPDA and PwPs across Europe today. It has formed the foundations for each and every EPDA project since 1997 – and will continue to do so.

Strong examples of this philosophy include the Move for Change campaign and The European Parkinson’s Standards of Care Consensus Statement.



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EPDA Charter

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Global Declaration on Parkinson's Disease, 2003

The Global Declaration is a physical document that expanded on the philosophy behind the EPDA’s Charter for People with Parkinson’s. It was launched by the EPDA and the Working Group on Parkinson’s Disease (which was  formed by the World Health Organisation in May 1997) in Mumbai, India, in December 2003. It called on world governments and all healthcare providers to take strong and decisive action in making Parkinson’s a public health priority area. It also described the effective and appropriate strategies that could improve the quality of life of people with Parkinson’s (PwPs), thereby reducing the societal cost and impact of the disease.  

The Global Declaration was signed and supported throughout the six WHO global regions (Africa, the Americas, South East Asia, Europe, Eastern Mediterranean and Western Pacific) between 2003 to 2008.

A number of high-profile figures signed the document, including Archbishop Desmond Tutu, Michael J Fox, Muhammad Ali and Janet Reno. Worldwide policymakers, monarchs and their families, leading Parkinson’s key opinion leaders, healthcare professionals, representatives from patient organisations and the treatment industry, and PwPs and their families also signed the Global Declaration.

What the Global Declaration on Parkinson’s says:

“Specifically, we urge every government to:

  • support the Charter for People with Parkinson's, launched 11 April 1997, which states that PwPs have the right to:                
  • be referred to a doctor with a special interest in Parkinson's
  • receive an accurate diagnosis
  • have access to support services
  • receive continuous care and
  • take part in managing the illness           
  • increase public awareness of Parkinson's as a priority health challenge, thereby reducing its stigma and removing discrimination against PwPs in the workplace
  • improve the lives of PwPs by ensuring that they receive appropriate treatment and reform medical education in support of the WHO’s 'Health for All' initiative
  • encourage all health authorities worldwide to support the WHO’s 'Health for All' concept, and implement a Parkinson's programme that is consistent with the resources available at each stage of industrial development to achieve co-ordination of effort by health workers within the three-tier model of service delivery
  • arrange care across the full spectrum of the illness, structured in accordance with the results of cost-effectiveness studies
  • encourage the partnership between neuroscientists and health workers to devise ways to improve access to needed care and treatment for all PwPs, and foster practice guidelines to assist healthcare workers in the management of medication side effects, especially among the elderly.
  • support the partnership between doctors and other healthcare workers with voluntary (non-governmental) organisations that represent patient interests to promote better understanding of Parkinson's
  • reach out to all ethnic and cultural groups of patients, and to overcome negative attitudes in society towards chronic neurological and psychiatric illness and provide practical assistance for countries with underdeveloped Parkinson's services
  • encourage research into Parkinson's and the development of multidisciplinary teams to improve its management.”

The Global Declaration on Parkinson's Disease can be downloaded here.

Global Declaration
Global Declaration on Parkinson's Disease

Global Parkinson's Disease Survey, 1998

Following on from the 1997 Participation in Life survey, the EPDA carried out the Global Parkinson’s Disease survey the following year. It was one of the largest surveys ever conducted on Parkinson’s and it provided a more in-depth and rigorous investigation into the factors affecting a person with Parkinson’s (PwP) health-related quality of life (HRQL).

It was a large, international and randomised survey that included perspectives from clinicians, PwPs and caregivers from six countries across three continents (Canada, Japan, Italy, Spain, the UK and the US) that had similarly developed health systems. The EPDA enrolled nearly 2,000 respondents: 203 clinicians, 1,020 PwPs and 687 carers.

The survey’s principal aims were to improve on the limitations of previous studies in order to better investigate and understand the factors that influence PwPs’ HRQL, and to identify those elements of disease management that have the greatest effect on the HRQL (in addition to disease stage, related disability and anti-Parkinson’s medication).

Some of the survey’s key conclusions included:

  • “Motor disability (as measured by disease stage) impacts on HRQL. Therefore, it can be reasonably assumed that interventional therapies that alleviate motor symptoms may improve HRQL. However, patients at similar stages of Parkinson’s can have varying levels of perceived HRQL. Therefore, patient-perceived HRQL may not be equated simply with disease severity or medication but may include other factors such as neuropsychiatiric complaints and non-drug therapies.”
  • “They [clinicians] also found that satisfaction with the explanation of the condition at diagnosis and current feelings of optimism all have a statistically significant impact on HRQL.”
  • “The data has clearly indicated that the impact of depression on HRQL is high. This finding, together with the failure of these patients to report it, indicates that depression should be taken into account by clinicians when managing Parkinson’s.”

Like the Participation in Life survey before it, the Global Parkinson’s Disease survey generated evidence – mostly from PwPs themselves – about what constituted quality of life. The surveys revealed that the telling of the diagnosis, depression and alternative types of therapy were all important to a PwP’s HRQL – in other words that drug management was only a small part of the bigger picture. There was now proof that pain, sleep, constipation and many other ‘hidden’ symptoms – not considered to be important at the time – caused greater distress.

Now, of course, these ‘hidden’ symptoms are universally known as non-motor symptoms. But the EPDA – through its innovative data collection surveys such as the Participation in Life and Global Parkinson’s Disease surveys – played a huge part in establishing their integral role in the disease process.

In addition, this wealth of evidence subsequently led to the launch of the EPDA-led Global Declaration on Parkinson’s Diseasein 2003, which urged governments around the world to support the Charter for People with Parkinson’sand make public awareness of Parkinson’s a priority health challenge.

The survey report can be downloaded here.

 

Guide to living with Parkinson's

These resources were created in 2009 to provide useful information for people with Parkinson's disease and their families and carers to help with their everyday living. They were developed in partnership between the EPDA, H. Lundbeck A/S and Teva Pharmaceutical Industries Ltd.

To download each resource please click on the links below: 

Guide to living with Parkinson's disease
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Patient relevant endpoints and goal attainments in Parkinson's Disease

The EPDA has been assisting GlaxoSmithKline in conducting research to understand the impact Parkinson’s has on people living with the disease as well as exploring medication issues.

The project began by interviewing people with Parkinson's (PwPs), family members who were living with someone with Parkinson’s (carers) and doctors who treat PwPs. A total of 32 interviews were conducted in the UK and Spain, with 10 PwPs, three carers and three treating doctors interviewed in each country. The interviews were completed in April 2012.

In-depth analysis was carried out on each of these interviews, and they have since been used to develop an online survey that will be available for PwPs to use across several European countries.

The survey aims to explore in more detail the relative impact of the symptoms of Parkinson’s, associated medication issues, and the relative importance of different aspects of treatment.

The survey has been successfully piloted with 30 PwPs in the UK, where data collection now continues; it will shortly be launched in Spain, Italy and France. The research will be completed later this year.

To find out more about the research please call or email Charlotte Howard at Oxford Outcomes.

Tel: +44 (0) 1865 320131

e-mail:  charlotte.howard@oxfordoutcomes.com

Start date

October 2011

Duration

18 months

EPDA representation

Lizzie Graham
Chiu Man

Oxford Outcomes
          
GlaxoSmithKline
         
EPDA

Medikidz

Most children don't understand medical conditions (or associated procedures and treatments), and they are often scared by what is going on around them. 

Medikidz, founded by doctors, is an initiative to explain medical concepts to young people in a fun and interesting way, using comic books.

The Medikidz are five superheroes on a mission to help young people understand illness and medical concepts. They take children on a journey through Mediland - an outerspace planet shaped just like the human body - to explain the diagnosis, investigation, treatment and prevention of different medical conditions.

Credibility is the cornerstone of the Medikidz offering - professional medical writers and doctors write all the content, which is subsequently peer-reviewed by leading consultants in each respective field.

In Medikidz Explain Parkinson's Disease, many aspects of Parkinson's disease are approached and explained in a simplified manner. The format of the comic is based on a real-life case study. 

 

Start date

June 2012

Duration

12 months

Launch

11 April 2013

EPDA representation

Lizzie Graham
Chiu Man
Dominic Graham

Medikidz

Medikidz order form

Launch press release

Medikidz

EPDA

My Life, My PD

My Life, My PD, was developed in conjunction with a European panel of healthcare professionals and people with an interest in Parkinson's and provides practical advice on managing some of the real life challenges that daily face people with Parkinson’s disease, such as sleeping difficulties and relationships with family and friends.

The guide (My Life, My PD Patient Booklet) is divided into five areas, each one including suggested questions that people with Parkinson’s disease can use when talking with their doctor and useful tips to help them prepare for their consultation. 

Living with PD: Day & Night Video

 

A short film was produced to illustrate some of the real life difficulties in living with Parkinson’s. It features Terry Kavanagh and his wife Jean, who have lived with the disease for over 20 years.

Patient booklet

My Life, My PD, was developed in conjunction with a European panel* of healthcare professionals and people with an interest in Parkinson's and provides practical advice on managing some of the real life challenges that people with Parkinson's face daily, such as sleeping difficulties and relationships with family and friends. The guide is divided into five areas, each one including suggested questions that people with Parkinson’s can use when talking with their doctor, and useful tips to help them prepare for their consultation.

My Life, My PD was developed in response to a European survey of people with Parkinson’s and recommendations issued by the European panel* in 2008. 

 

My Life My PD Patient Booklet

Download

Click on the image above to download the English version of the patient booklet.

The patient booklet is also available in the following languages (click on link to download):

 

Press release

 

Real Life, Real PD survey

The Real Life, Real PD survey was a patient survey conducted across EPDA member countries and supported by pharmaceutical company, GlaxoSmithKline, focusing on the realities of living with Parkinson’s disease (PD) both ‘day and night’.

The survey focused upon questions surrounding difficulties with daily activities such as eating and dressing, mood and possible impact on relationships plus sleep disturbances and emotional well-being. 

Pan-European Results and Recommendations for Change

The Real Life, Real PD online survey of Parkinson’s Disease (PD), provided insights into the realities of living with PD. Almost 3000 patients from across Europe participated in the survey between October 2007 and February 2008, when final results were collated and analysed.

A multidisciplinary panel of healthcare professionals and people with an interest in PD, have since reviewed the survey results and developed ten recommendations that could improve the management of PD. It is hoped that the results of the survey will highlight the need for better control of PD symptoms over a 24-hour period and some of the less widely addressed aspects of living with the condition.

Occupational therapy survey, 2009

Because people with Parkinson’s (PwPs) experience diverse symptoms that impact heavily on many aspects of their daily life, occupational therapists play an important part in optimising independence, enhancing coping strategies and social participation.

As a result, the EPDA carried out an occupational therapy survey from 2008 to 2009. The survey evaluated the contribution occupational therapists make to the management of Parkinson’s on a daily basis.

The survey was translated into Norwegian, Swedish and Slovenian, and the results were published in the European Neurological Journal and can be downloaded here.

 


Update

 OT Survey poster - EFNS 2012
Poster presented at EFNS 2012 - click to download
How People Living with Parkinson's Disease in Four European Countries View Occupational Therapy
ENJ Survey report - click to download
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Participation in Life survey, 1997

Data collection has always been a major focus for the EPDA – and the Participation in Life survey was its first project in this area.

The 1997 project was the largest survey at the time to be carried out by a Parkinson’s patient organisation with nearly 7,000 people with Parkinson’s (PwPs) responding from 14 countries across three continents (Europe, the US and South America).

The survey was designed to investigate how symptoms and medication-related problems affected a PwP’s ability to “undertake even the simple tasks they met on a day-to-day basis” in their everyday lives; it also investigated “any changes that occurred as the disease progressed”.

The survey’s key conclusions were as follows:

  • “Our Participation in Life survey provided the evidence to support what PwPs had been telling the EPDA for a long time, highlighting the extent to which Parkinson’s and certain treatments affect their lives."
  • “The daily challenges of PwPs were seldom fully considered in the design of treatment strategies and care management, which generally focused on controlling the motor symptoms of the condition.”
  • “The survey has helped reveal that long-relied-upon traditional therapies are not enough to satisfy all aspects of the disease. There is a need for doctors to consider new therapies which can prolong the window of effective treatment for PwPs, enabling them to continue to participate as fully as possible in everyday life.”  

This data proved incredibly significant as it provided clear evidence to support the wealth of anecdotal evidence that existed at the time. As PwPs, their families and carers, healthcare professionals and anyone associated with the disease will acknowledge, the survey’s conclusions are well-established today. This was not the case in 1997, however, which makes the EPDA’s Participation in Life survey a truly pioneering project. The success of the survey also laid the foundations for the EPDA’s next data collection project: the Global Parkinson’s Disease Survey.

The report can be downloaded here.

PDNS Core Competencies report, 2009

The role of the Parkinson’s disease nurse specialist (PDNS) is intrinsic to the promotion of dignity and empowerment for people living with Parkinson’s (PwPs). However, the EPDA had felt for many years that there was a need to galvanise global efforts to advocate for the development and implementation of the PDNS model across Europe to ensure PWPs, their families and carers have access to this vital support in their long-term management.

In 2008, the International Council of Nurses (ICN), in conjunction with the EPDA, developed a framework that outlined the competencies required for specialist nurse practice. This was followed in 2009 with the EPDA-produced PDNS Core Competencies report, which outlines the settings, roles and responsibilities of the PDNS.  

The two documents can be downloaded below:

It is the EPDA’s aspiration to expand the PDNS service across the globe, and it is imperative that the quality of the role be developed to ensure safe and competent nursing care. This is the primary function of the PDNS Core Competencies framework and report.

PDNS Core Competencies report
Click on image to download

Regional Project

The EPDA's Regional Project is an initiative that aims to develop more regular links between the EPDA and its member organisations that share language and cultural similarities. 

The project also brings together EPDA members and representatives of the treatment industry in the same region of Europe to explore the possibility of working together across borders and sharing experiences on mutually beneficial initiatives.

Objectives

  • To listen to the regional Parkinson’s organisations and understand their respective priority areas.
  • To share learning between the EPDA, the member organisations and the treatment industry.
  • To identify and develop a regional and collaborative project that would involve collaborative partnerships with the treatment industry.
  • To identify realistic timelines and an evaluation process.
  • To share the results of the project with all the EPDA member organisations.

Process

An initial EPDA 'planning meeting' is held with all contributing member organisations. This meeting identifies three priority areas that are common to all the members. It is hoped that from these priority areas a collaborative regional project could be developed. 

If you have any questions, please email info@epda.eu.com.     

The Nordic Regional Project (2013) 

The Nordic Regional Project took place in Helsinki, Finland, in May 2013. EPDA member organisation attendees included representatives from Denmark, Finland, the Faroe Islands, Norway and Sweden. 

Attendees

  • Allan Bergholt 
    Parkinsonforeningen
  • Jorry Højer 
    Parkinsonforeningen
  • Marianne Munk 
    Parkinsonforeningen
  • Mette Holst 
    Parkinsonforeningen
  • Durid Johannesen 
    Parkinsonfelagið
  • Kristianna Michelsen 
    Parkinsonfelagið
  • Kirsti Martikainen 
    Suomen Parkinson-liitto ry
  • Ariel Gordin 
    Suomen Parkinson-liitto ry
  • Arja Pasila 
    Suomen Parkinson-liitto ry
  • Hanna Mattila 
    Suomen Parkinson-liitto ry
  • Anders Leines 
    Norges Parkinsonforbund
  • Magne Fredriksen 
    Norges Parkinsonforbund
  • Sverre Nilsen 
    Norges Parkinsonforbund
  • Bo Jäghult 
    ParkinsonFörbundet
  • Christe Eker 
    ParkinsonFörbundet
  • Maude Eker 
    ParkinsonFörbundet
  • Jennifer Shum 
    AbbVie, Belgium
  • Charlotte Nortvedt 
    UCB, Belgium
  • Danek Olsen 
    AbbVie, Denmark
  • Ossi Koskinen 
    AbbVie, Finland
  • Kari Reinikainen 
    GSK, Finland
  • Susanna Korpivaara 
    GSK, Finland
  • Elizabeth Lambertsen 
    Orion Pharma, Finland
  • Outi Tuominen 
    UCB, Finland
  • Alexandra Moutet 
    AbbVie, France
  • Hilde Abrahamsen 
    AbbVie, Norway
  • Unn-Tone Lien 
    Medtronic Norge AS, Norway
  • Lotta Luciani 
    AbbVie, Sweden
  • Adam Pinter 
    Medtronic, Switzerland

 

Priority topics

The following three priority areas were agreed at the planning meeting in March 2013.

  1. Rehabilitation
  2. Carers
  3. Young people with Parkinson’s

 

Key outcomes from the May meeting

  • Younger people with Parkinson’s (YPwP) emerged as the priority theme for a potential regional project
  • An interim steering group was formed (featuring two representatives from each organisation)
  • The treatment industry were invited to attend future meetings (and they accepted)
  • A project timeline will be agreed once further discussions have been held and decisions made at the next interim steering group meeting
  • Magne Wang Fredriksen (Norway) agreed to co-ordinate the next meeting (18 December 2013)
  • The December meeting will be held at the Parkinsonforeningen offices, Copenhagen 


Points to consider

  • Increasing activity/membership of YPwP
  • YPwP help make the organisation more dynamic and assist with changing the public perception of the organisation and the disease
  • A survey was suggested to find out the needs of YPwP
  • Social media was agreed to be an important tool
  • YPwP ambassadors were thought to be important in helping increase engagement with younger people

 

Related documents


Follow-up meeting in December

A meeting was held on 18 December 2013 with representatives from Norway, Denmark and Sweden discussing the identified key areas that they could all work together on.

Current projects and activities were discussed for each of the countries. 

Challenges raised

  • The age definition of a younger person with Parkinson's differs in each country
  • How to identify younger people with Parkinson's in each country
  • The variability of geographical distances that would have an impact on attendance at any meetings
  • A major challenge is that the legislation and social security support differs between countries – there is no regional similarity
  • Parkinson's needs to be raised on the political agenda of each country so that the complex issues of younger people with Parkinson's can be highlighted with greater success
  • To be successful with the above objectives, partnerships need to be formed between patient organisations, healthcare professionals and the treatment industry.


Key outcome of December meeting

The key outcome of this meeting was that World Parkinson's Disease Day 2015 is an ideal opportunity for all the organisations and their partners to work together as a region, sharing the same focus to improve the lives of younger people with Parkinson's and their families.


Spring 2014 meeting

Representatives from Denmark, Finland, Faroe Islands, Sweden and Norway came together in Stockholm and shared experiences for each organisation's projects and programme activities.

Topics discussed included:

  • Careers in every Nordic country
  • How to readch and attract younger people with parkinson's and their families
  • Rehabilitation situation / programms in the regions
  • Brainbus project in Sweden 2014 - 2015
  • International Parkinson's Disease Day - 11th April 2015


Future

Nordic meetings will continue to take place on annual basis with an emphasis of "learning in partnership" and "inspiring each other".

STRONG

The EPDA's STRONG initiative aims to provide support to the member organisations that would benefit from our help the most.        

A number of our members face stern challenges – economic, political and cultural – that have an impact on the level of awareness and educational programmes they can provide to their national members. The EPDA believes that if we can help some of our members to become stronger and more effective Parkinson’s organisations then this will inspire other members to do the same in the years to come.

The long-term aim of STRONG is to encourage EPDA members to grow in confidence and become ultimately autonomous in terms of their national Parkinson’s awareness-raising activities.


More >

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EU-funded projects

The European Union-funded projects in this section are partnered by the EPDA. Click on links for more information.

WORLD PARKINSON’S DISEASE DAY, 1997

 

The EPDA’s early years saw a flurry of activity that established the umbrella organisation as a true ‘mover and shaker’ in the world of Parkinson’s. However, 1997 proved to be a landmark year with the first ever World Parkinson’s Disease Day on 11 April, which also saw the launch of the Charter for People with Parkinson’s in London, the UK.

The event, which commemorated the birthday of Dr James Parkinson, was the first of successive annual World Parkinson’s Disease Day celebrations – every year it aims to raise the profile of Parkinson’s and enhance the public's awareness of the disease.

The 1997 event was totally unique – more than 30 Parkinson’s organisations around the world united on the same day to not only raise awareness of the disease but also to support the EPDA’s Charter. This sense of unity had never been seen before on such a scale. Previously, European Parkinson’s organisations saw themselves as independent entities and held their own regional awareness periods at different times of the year. There was no single day devoted to the disease.

World Parkinson’s Disease Day has since taken place every year on 11 April, inspiring countless awareness-raising activities from Parkinson’s organisations around the world. In short, it has become the most important date in the Parkinson’s calendar.  

To put the event in context of the time, it was co-sponsored by the World Health Organisation and attracted a wealth of high-profile support including Pope John Paul II, Luciano Pavarotti, Princess Diana, Muhammad Ali, various UK prime ministers and other influential people from around the world.