Deciding on drug treatments and how to manage the life of a person with Parkinson's (PWP) is not easy.

Choosing the best way to live with the disease – in terms of both mental attitude and physical health – can be confusing for both the person with Parkinson's (PWP) and their healthcare professional. It requires excellent communication between both parties.

As a result, the EPDA and the Parkinson's Association of Ireland (PAI) have worked together to launch the Parkinson’s Decision Aid (PDA), an online educational toolkit that seeks to put the PWP in the best possible position to make the right choices so they themselves can actively work with their healthcare professional to improve their quality of life and make informed choices together. It is hoped the PDA will be rolled out in other parts of Europe over the next few years.

With so much variable and confusing information currently available via the internet, the development of the PDA is both timely and essential. It provides a wealth of up-to-date information about Parkinson’s that has been researched and reviewed by European Parkinson’s experts, and has been written in an easy-to-understand style for everyone.

• Read full PDA press release

 

We are pleased to let you know that EPDA has joined Quidco - http://www2.quidco.com - a website which allows you to help with our fundraising simply by shopping online. Quidco is a well-known fundraising tool – it is non-political and non-promotional, and there are no set-up or running costs for EPDA. It is simply a tool for charities such as EPDA to fundraise through receiving commission on online purchases.

How does this work? You log onto Quidco to do your online shopping, say with Amazon, you then access Amazon from the Quidco website and Quidco receives a commission from Amazon for your business. You can then nominate to pass this some or all of this commission to EPDA via the Quidco fundraising scheme.

We hope that you will support EPDA in this initiative, particularly as Christmas approaches – for more details on how you can help us see http://www.quidco.com/fundraising/european-parkinson-s-disease-association

Presentations given at the 2009 HOPE Conference have been made available online.

You can go directly to the presentations by clicking here.

For further information concerning the conference, resources or about the Northwest Parkinsn's Foundation, email info@nwpf.org

London, 13:30 BST, 15th September, 2009: A new Parkinson’s disease (PD) patient guide has been launched today by GSK, in conjunction with the European Parkinson’s Disease Association (EPDA), to enable people with PD to take greater control in the management of their condition. Entitled ‘My Life, My PD’ and launched at the European Federation of Neurological Societies (EFNS) Congress, the guide provides advice on how to communicate more effectively with healthcare professionals about issues that matter to them.

My Life, My PD, was developed in conjunction with a European panel of healthcare professionals and people with an interest in PD 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 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.

• Read full GSK Press Release (15 September 2009)

 

Monday 14 September 2009, Florence, Italy. National and European Parliaments, neurological specialists and members of the general public throughout Europe will be targeted in a major new action campaign spearheaded by the European Parkinson’s Disease Association (EPDA); which represents the interests of more than a million people with Parkinson’s disease.

Recent research into Parkinson’s care in Italy has highlighted failings in the early diagnosis, access to specialist care and knowledge of the condition among the medical profession.1 The EPDA is concerned that these issues may not be confined just to Italy and that millions of Euros every year may be wasted by governments failing to provide proper treatment for those people affected by Parkinson’s. The EPDA is now initiating more detailed investigations within other EU countries to establish the extent of the problem across Europe.

According to Professor Fabrizio Stocchi, Director of the Parkinson’s Disease and Movement Disorders Research Centre at the IRCCS San Raffaele, Rome, “The medical profession could do more for people with Parkinson’s. Current gaps in understanding about management and treatment are leading to failures in both diagnosis and care. Even when there is a correct diagnosis in place the tendency is often to delay treatment for as long as possible. This practice is not only negatively impacting patients’ lives but also wasting taxpayers’ money. Early Parkinson’s intervention may slow disease progression, improve the quality of patients’ lives and is also associated with significant direct and indirect cost savings.”

In the Netherlands, where action is being taken, people with Parkinson’s have experienced significant improvements in care. The Netherlands’ ParkinsonNet regional programme has led to patients receiving earlier diagnoses, improved multidisciplinary care and early access to treatments that can slow symptom progression. Consequently, the human costs of this devastating disease have been reduced, coupled with the government reportedly saving an estimated €42 million directly because of the programme.

EPDA patron, Mary G Baker MBE, commented, “Parkinson’s is a costly disease. It’s been 12 years since the World Health Organization initiated the EPDA’s Charter in Parkinson’s, yet Parkinson’s care is still substandard in many countries. In an ageing population, the human and economic impact of this terrible disease will continue to rise if not addressed.”

This warning came during a presentation today by the EPDA at the 13th Congress of the European Federation of Neurological Societies (EFNS), where the organisation announced plans to launch a major new campaign calling on European governments to review their approach to Parkinson’s. The campaign, ‘Move for Change’, will include further research into Parkinson’s management and treatment across Europe, a European Parkinson’s Action Day and carefully coordinated activities directed at European and National Parliaments, medical professionals and members of the general public.

Mary G Baker MBE continues, “We want to unite Europe in the fight against Parkinson’s. Ignorance is costing everyone, not just those affected by the disease. The EPDA hopes ‘Move for Change’ will instigate change at the highest levels to ensure that people with Parkinson’s receive proper diagnosis and the right treatment, at the right time.”

For further information please visit the Move for Change on www.epda.eu.com/move4change.

Teva and Lundbeck in association with the EPDA have launched their new myPDinfo.com website – a Parkinson’s disease resource of useful information to help people with Parkinson’s disease, their family and carers, in everyday life with the condition.

The website complements the EPDA, Teva, Lundbeck patient guide - Guide to Living with Parkinson's and Patient Diary.

The myPDinfo.com website is currently being translated into Spanish, Italian, German, Turkish, and French.

These courses are suitable for any health or social care professional whose main area of work involves people with Parkinson’s Disease (PD), whether working in hospital or community practice, in the UK or Overseas. The course has been written and reviewed by PD specialists in association with York Hospitals (NHS) Trust through its specialist unit for NeuroEducation, and is supported by the Parkinson's Disease Society of the UK.

Leeds Metropolitan University (UK) postgraduate distance learning modules lead to different awards depending on the number of modules successfully completed, Certificate and Diploma level courses are also offered to suitable candidates (see link below for more details).

The new Parkinson's Disease Practice MSc course starts with a one day Induction meeting held at Leeds Metropolitan University in Leeds, UK and is then delivered by Online distance learning via our Synchronous and Asynchronous virtual learning environments, Elluminate and X-Stream. Access to all the necessary resources are supplied electronically via X-Stream and by dvd’s which will be posted to all students on the course. Full tutorial support is available via Elluminate live virtual meetings and by email. Therefore it is essential you have regular access to computer IT facilities and the Internet to enroll on this course of study.

For further information and full course details, please visit :
http://prospectus.leedsmet.ac.uk/main/detail.htm?p=62&ban=CPPPR&attendance=3

More than 350 people with Parkinson's and health and social care organisations gave evidence to the Inquiry. They reported problems such as limited information for patients, lack of respite for carers, and poor access to expert nursing and therapy, all underpinned by a failure to deliver a 'joined up' approach to care.

• Read full APPG Press Release (9 July 2009)

 

The campaign is designed to improve understanding of all aspects of Parkinson's among a wide range of audiences including people with Parkinson's, their families and friends, healthcare professionals and policy makers. The information is available on the EPDA website in English, German, Italian,Spanish and Turkish.

Please visit the Parkinson's Awareness campaign website: www.parkinsonsawareness.eu.com

The Parkinson's Unity Walk (PUW), a grassroots organization, began in 1994 through the dedicated efforts of patient, families, support groups and friends who were affected by Parkinson's disease. Their main goal was to raise awareness and funds for research to find a cure for Parkinson's.

Over the last fourteen years, the Unity Walk has grown from 200 participants in the first event to well over 10,000 participants in the 2008 walk. The funds raised for the Walk have also dramatically increased with each passing year. In 1994, the Unity Walk raised $16,000 in research funds and in 2008 a new one-year record raising over $1,800,000 for Parkinson’s research.

The 15th Parkinson's Unity Walk was truly a community education day, with opportunities for those in attendance to ask a physician questions, receive free literature and resources from the Parkinson's advocacy groups and from event sponsors. This year's event also included an international presence, with Susanna Lindvall, Vice President of the European Parkinson's Disease Association addressing the audience, discussing the importance of worldwide partnerships in the fight against Parkinson's. The past, present and future of the Parkinson's disease community was also the focus of several other powerful speeches, including those from Former Attorney General Janet Reno, her third straight appearance, and Dr. Jean Hubble, Executive Director at Boehringer Ingelheim Pharmaceuticals, Inc.

• Click here to view the Parkinson's Unity Walk Webcast.

 

 

The EPDA are delighted to welcome its newest member EPIKOUROS - Kinisis (Movement) Branch. Folllowing discussions with Dr Panayiotis Zikosat the recent euroYapmeet Conference in Croatia, work has begun in earnest to translate the Rewrite Tomorrow website into Greek.

See the Rewrite Tomorrow sitemap to see which sections have already been completed.

When: 19 November 2008, 12:15pm - 3:00pm

Where: Terrace Pavilion, House of Commons

Baroness Anita Gale, Chair of the APPG for Parkinson’s disease, will officially launch an inquiry into health and social care provision for people affected by Parkinson’s.

Despite the clear standards and evidence base set out in the National Service Framework for long term neurological conditions, and the Parkinson’s disease National Clinical Guideline, a recent PDS survey revealed access to services vary dramatically across the UK.

The APPG will invite national and local health and social care providers, regulators, professional bodies and charities to submit evidence to the inquiry.

Speakers at the launch will include:

• Baroness Anita Gale, Chair. APPG for Parkinson disease
• Steve Ford, Chief Executive, Parkinson’s Disease Society
• Guest speakers living with Parkinson’s

-End-

Notes to editors

If you would like to arrange an interview with a member of the APPG or the PDS please contact Sonya Roberts, Media Manager, Tel 020 7963 9300, email saroberts@parkinsons.org.uk or Siân Roberts, Media and Communications Officer, Tel: 020 7932 9311: email: sroberts@parkinsons.org.uk

For out of hours press enquiries: 07961 460248

About the APPG for Parkinson’s disease

Chair of the APPG for Parkinson’s disease:

• Baroness Gale

Officers of the APPG for Parkinson’s disease:

• Baroness Finlay of Llandaff – Vice Chair
• Mark Hunter MP – Vice Chair
• Anne Milton MP – Vice Chair
• Jeremy Browne MP – Treasurer
• Lord Brooke of Sutton Mandeville – Secretary
• Paul Burstow MP – Secretary
• Madeleine Moon MP – Secretary

The APPG for Parkinson's disease was established in June 2008 in order to keep Parkinson's disease and relevant public policy issues on the political agenda. The PDS acts as Secretariat for the APPG for Parkinson's disease.

The PDS member’s survey 2007 Life with Parkinson’s today – room for improvement identified that access to public services such as the NHS, social services and transport in the UK for people with Parkinson’s and their carers was inequitable.

The inquiry will result in a report published by the APPG in the summer of 2009.

Over 470 professionals, including GPs, social workers, and nurses* responded to an online questionnaire designed to identify current levels of knowledge and to assess future training needs. The results have been released as The Parkinson’s and Mental Health Education Project.

The survey reveals:

• Approximately one third of professionals are not confident in identifying the mental health symptoms associated with Parkinson’s
• More than half of the professionals have not received any training in this area during the last two years
• There is a willingness to learn more among health and social care professionals with 87% of them declaring an interest in learning more about the mental health symptoms associated with Parkinson’s

The PDS is now planning a specific training programme designed for professionals with regular consultation with key professional bodies. Five programmes will be piloted across the UK from February 2009. For more information and to arrange attendance, contact Jackie Spencer, Mental Health Project Manager on jspencer@parkinsons.org.uk.

Next month the Charity is holding a one-day conference for health and social care professionals involved in the care of people with Parkinson’s who would like to update their knowledge on the mental health aspects of the condition.

‘Parkinson’s disease: responding to mental health issues in Parkinson’s’ is taking place on Thursday 23 September, at Birmingham Children’s Hospital, Steelhouse Lane, Birmingham. For more information email: professionals@parkinsons.org.uk.

Attendees will hear presentations on Parkinson’s disease and depression, dementia and impulse control disorders. Workshop sessions will cover evaluating mood disorder in Parkinson’s and the interaction of cognitive dysfunction and gait.

Daiga Heisters, National Education Advisor at the Parkinson’s Disease Society said:

“The Parkinson’s and Mental Health Education Project has clearly identified the need for health and social care professionals to increase their understanding of Parkinson’s and related mental health issues. The PDS is keen to use this information to design a specific training programme to help professionals find practical ways to help their patients have the best quality of life and the upcoming conference is a good place to begin.”

A limited number of Parkinson’s Disease Society bursaries are available for health and social care professionals working with people with Parkinson’s. For details, contact Daiga Heisters on professionals@parkinsons.org.uk.

A free resource The Professionals Guide to Parkinson’s Disease is divided into eight professional disciplines and gives professionals a holistic view of the condition. For information on how to order this booklet go to www.parkinsons.org.uk .

The experiment allowed people who do not have Parkinson's to immerse themselves within a situation where they could feel and experience the difficulties and frustrations faced by people with Parkinson's on a daily basis.

An apartment filled with thousands of polystyrene balls provided a perfect simulation of obstacles and resistance to movement. Carefully re-designed household items formed scenarios demonstrating the difficulties of living with Parkinson's.

More information can be found at www.parkinson.dk/omforeningen/11april2008/

A short video documentary of the event can be viewed at www.parkinson.dk/fundanemt/files/parkinson.wmv. The video is in Danish but the film speaks for itself.

• Download colour catalogue (3MB)

 

This is the second edition of the event, started in 2007. All proceeds benefit the Parkinson Society Maritime Region. Funds provide for support services, education programs and research.

The 58 plates will be auctioned over the next three weeks at www.auctionwire.com/plates or by visiting EBay under Plates for Parkinson's.

LAUNCHING APRIL 21, 2008

Anne Murray Duets CD (singer), Audrey De Montigny (Canadian Idol singer), Barry Colpitts (folk artist), Brad Marchand (hockey), Bradford Naugler (folk artist), Brent Butt (comedian and actor), Bruno Bobak (artist), Carmen Electra (actress), David Foster (musician), Deborah Cox (singer), Dwayne Johnson (actor), Holly Carr (artist), Ina Garten (television chef), Martina McBride (singer), Mike Holmes (television), PM Harper & Rachel (politics), Premier Shawn Graham (politics), Rita MacNeil (singer), Roger Savage (artist), Terry Kelly (singer), William Shatner (actor), Harrison Ford (actor)

LAUNCHING APRIL 27, 2008

Anjelica Huston (actress), Aria Wallace (actress), Betty White (actress), Dakota Fanning (actress), David Hyde Pierce (actor), Florence Henderson (actress), Guy Laliberte from Cirque du soleil (entertainment) Henry Winkler (actor and director) Jordin Sparks (American Idol singer) Laura Linney (actress) Chef Mario Batali (television and chef) Martha Stewart (television, author) Molly Lamb Bobak (artist) Nate Berkus (decorator and television) Neil Patrick Harris (actor) Pam Tillis (singer) Chef Paul Prudhomme (television and chef) Penny Marshall (actress and director) Peter MacKay, MP (politics) Phylis Diller (comedienne) Premier Rodney MacDonald (politics) Ransford Naugler (folk artist) Stephen Colbert (television) Tom Hanks (actor and director)

LAUNCHING MAY 4, 2008

Sarah Ferguson The Duchess of York (royalty), Sarah MacLauchlan (singer and songwriter), Margaret Atwood (writer), Muhammad Ali (boxer and Olympian), Phil Collins (singer and songwriter), American Idol Chris Daughtry (American Idol singer), Johnny Depp (actor), John Travolta (actor), Anne Murray (singer), Christopher Plummer (actor), David Foster (musician), Sidney Crosby (hockey), Rob Lowe (actor), Limited Edition Muhammad Ali Signed Proof Sheet (sports), Limited Edition 8x10 print from Ali’s Final Fight (sports), Limited Edition 8x10 print from Ali’s Final Fight (sports), Limited Edition 8x10 print from Ali’s Final Fight (sports)

BIDDING IS NOW OPEN

Interviews and photos:

Paul D. McNair
Executive Director
PARKINSON SOCIETY MARITIME REGION
830-59 Spring Garden Road
Halifax – Nova Scotia – B3H 1Y6
t: 902.422.3656 | f: 902.422.3797 | e: pmcnair@parkinsonmaritimes.ca

The report contains the key findings relating to the following areas:

• health care services from diagnosis onwards
• information needs of people with Parkinson's
• education of professionals
• support for living day to day with Parkinson's
• the impact of Parkinson's upon carers

The survey, which was completed by more than 13,000 members of the PDS, provides a significant insight into all aspects of life with Parkinson's. The report highlights inconsistencies in access to specialist care across the UK and shows that many carers are not receiving the information or support they need.

More broadly, the survey has increased our understanding of the needs of people living with Parkinson's and will inform our work and development as the leading organisation for people with Parkinson's in the UK.

The survey clearly defines the agenda for change for people with Parkinson's, their carers and families.

We call on health and social care providers to engage with us to understand what their local residents told us and work with us to address the gaps that they highlighted.

We call on researchers to use the range of information that we have gathered to accelerate the pace at which we can find better treatments and, ultimately, a cure for Parkinson's.

And we call on everyone to support the PDS as we drive forward progress and change on the issues highlighted by the thousands of people living with Parkinson's who took the time to complete our survey.

To order a free copy of the findings that are relevant to where you live or a copy of the report, email pr@parkinsons.org.uk or phone 020 7963 9370.

The reports are available to download in PDF format:

• 'Life with Parkinson's today – room for improvement' report
• Summary of UK findings
• Summary for Wales
• Summary for England
• Summary for Scotland
• Summary for Northern Ireland

• Download brochure

 

To mark their anniversary, a brochure was designed highlighting the major milestones of the organisation.

• News Release

 

The PDS is therefore taking steps to fill this gap and has developed a two year project with funding received from the Department of Health, beginning with a survey. The survey will allow the PDS to identify exactly what the training and information needs of mental health professionals are with regard to Parkinson's disease.