Parkinson's UK

Parkinson's UK

September 29, 2010 11:11 ET

One Million Signatures Needed to Prioritise Parkinson's on Health, Social and Economic Agendas

LONDON, UNITED KINGDOM--(Marketwire - Sept. 29, 2010) -

Editors Note: There is a photo and video associated with this press release.

A worldwide appeal to call for one million people to sign up to the global Parkinson's pledge was launched today and will be the lasting legacy of the second World Parkinson Congress (WPC) being held in Glasgow this week (28 September - 1 October).

There are around 7.4 million people in the world with Parkinson's, a degenerative condition for which there is no cure. People signing up to the pledge will be joining a global Parkinson's movement to help make Parkinson's a health, social and economic priority around the world and to work together to find a cure for Parkinson's.

The picture of Parkinson's services across the world shows serious inconsistencies in access to treatments and services for those living with Parkinson's. In the UK, 1 in 4 people with Parkinson's has never seen a specialist nurse, and in Australia, there is one Parkinson's nurse per 10 patients.

People living with Parkinson's depend on a wide range of health care professionals, which extends beyond nurses, yet in Canada, there is a desperate shortage of neurologists. In the UK, 1 in 3 people living with Parkinson's have not been referred for mental health support, despite about 30% having dementia and around 40% experiencing depression. In Australia, nearly all patients have access to a mental health support.

In Australia, 50,000 speech and language specialists manage 80,000 patients, yet in the UK, 80,000 out of 120,000 patients have never been assessed by a language specialist.

The issues behind these statistics will be one of the topics discussed at the World Parkinson Congress, a four day event which sees thousands of researchers, scientists, carers and people living with Parkinson's come together to learn about the latest developments in Parkinson's and the work towards finding a cure.

Jane Asher, President of Parkinson's UK, whose brother-in-law has Parkinson's, is championing the global pledge. She said: "We are calling on people from all walks of life, all over the world to sign up to this pledge and look towards a future without Parkinson's.

"I first learnt about Parkinson's as a child, from my doctor father, who was clearly distressed by the effects it had on his patients. But it wasn't until someone close to me was diagnosed that I saw for myself the irrevocable and cruel physical and mental symptoms that Parkinson's involves.

Elizabeth Pollard, Congress Manager at the World Parkinson Congress, said: "We are delighted that so many well-known people are supporting the pledge. The target is to gather one million people to join the global Parkinson's movement by the next WPC in three years' time in October 2013 in Montreal, Canada. We will present them to the World Health Organisation and other international bodies to help make Parkinson's a priority health, social and economic issue around the world. Your signature will help us to drive our mission forwards."

Steve Ford, Chief Executive at Parkinson's UK, said: "It's easy to get involved and make a real difference to the lives of people with Parkinson's. You can sign the global Parkinson's pledge and join the Parkinson's movement. You can find out more about the condition via your local Parkinson's charity, like Parkinson's UK. Or you can make a donation to help us find a cure for Parkinson's."

To learn more about the pledge visit www.parkinsonspledge.org or watch the YouTube video.

Notes to editors

Further statistics include:

Parkinson's in UK
  • 120,000 people live with Parkinson's
  • 1 in 20 people are under the age of 40 when diagnosed
  • 1 in 4 people with Parkinson's have never seen a specialist nurse, and two thirds have never been assessed by a speech and language therapist
  • 1 in 3 people with mental health symptoms are not referred to a specialist
  • £45 million has been invested in research since 1969(i)
Parkinson's in Canada
  • More than 100,000 people are living with Parkinson's
  • There is a desperate need for more neurologists
  • Access to treatment is challenging for those living with Parkinson's because many new drugs are not covered on provincial formularies
  • $18 million has been invested in research since 1982 by Parkinson Society Canada
  • Deep brain stimulation (DBS) was first carried out in Canada
  • Robots are used in the Maritime region to help provide services in isolated and rural areas(ii)
Parkinson's in Australia
  • More than 80,000 people are living with Parkinson's
  • 8,000 people are diagnosed each year
  • 8,000 people are under the age of 40 when diagnosed
  • There are 10,000 Parkinson's Disease nurse specialists
  • 4.2 per cent of total health expenditure ($14.2 million) is spent on research(iii)
Parkinson's in US
  • Nearly 1 million people are living with Parkinson's(iv)
  • 60,000 people are diagnosed each year(v)
  • 4 per cent of those diagnosed are under the age of 50(vi)
  • There are 3,400 neuroscience registered nurses in the US, available in 33 states.(vii)
  • $131 billion is spent on health research in US.(viii)

Case Studies

USA – Pamela Quinn

Attending the WPC this year is Pamela Quinn, who has been living with Parkinson's for the last 12 years. Traveling all the way from New York City, Pamela danced professionally for 20 years with ODC/San Francisco and with actor/writer Michael O'Connor before she was diagnosed with Parkinson's at the age of 42. 

Since that time she has used her extensive movement background, along with her personal experience of the disease, to investigate and create movement therapy for people with Parkinson's. Her innovative approach has gained growing recognition and made her a sought after individual therapist and advisor for Parkinson's groups. Pamela is also acting as a consultant for a film in which a character, played by Christopher Plummer, is diagnosed with Parkinson's and recently created an award-winning video about her condition for the WPC.

Pamela says, "Parkinson's disease is horrible and very frustrating. That said, something deeply satisfying has also come from it. If I never had this challenge, I would never have had the opportunity to understand the ways in which my training and experience fortified me for it, and I would never be communicating my own discoveries about the resilience of our capacities for movement to others. My disease took dance from me, but in another way gave it back.'

Canada – Peter Davison

Attending the WPC this year is Peter Davison who has been living with Parkinson's for the last five years. Travelling all the way from Halifax, Novia Scotia, Canada, Peter has spent years struggling to adopt a child despite the misconceptions surrounding his ability as a parent due to his condition.

He has overcome these misconceptions and today is the proud parent of his young daughter, Hannah. He recently created a video detailing his struggles to adopt. A motivational speaker, Peter also runs professional development programs and in 1995, he was honoured with a Global Citizen Award from the Nova Scotia Chapter of the United Nations Association in Canada for his work in promoting peace. Peter has a mission, 'I want to help people eliminate the 'stinking thinking' that prevents them being the best they can be. If individuals can realise their potential, it's good for them, their families, their employers, and their communities.'

Australia – Sharon Bensted

Attending the WPC this year is Sharon Bensted who has been living with Parkinson's for the last seven years. Attending from Geelong, Victoria, Australia, Sharon is a single mother who was diagnosed with the condition at the mere age of 31.

Rather than letting her condition disable her, Sharon has been studying to become a teacher, with the help of her daughters Leah and Claire, who cook every Sunday to ease the pressure on their mother.

She says, "Parkinson's is a condition that does not discriminate. A common misconception is that the disease is only prevalent amongst the old. Parkinson's requires a lot of adjustment and understanding from loved ones."

About the WPC: The World Parkinson Congress aims to provide an international forum for the latest scientific discoveries, medical practices and support for carers related to Parkinson's. By bringing physicians, scientists, allied health professionals, carers and people with Parkinson's together, we hope to create a worldwide dialogue to help find a cure and better treatments for Parkinson's. www.worldpdcongress.org

About Parkinson's UK: As the UK's Parkinson's support and research charity we're leading the work to find a cure, and we're closer than ever. We also campaign to change attitudes and demand better services. www.parkinsons.org.uk

Our work is totally dependent on donations. Help us to find a cure and improve life for everyone affected by Parkinson's. 

(i) Statistics derived from 'Please mind the gap: Parkinson's disease services today' July 2009 and www.parkinsons.org.uk

(ii) www.parkinson.ca

(iii) *Statistics provided by Parkinson's NSW and the Access Economics report from 2008 – "Living with Parkinson's Disease: Challenges and Positive Steps for the Future."

(iv) Parkinson's Disease Foundation

(v) The National Parkinson foundation

(vi) Parkinson's Disease Foundation

(vii) The American Association of Neuroscience Nurses

(viii) US department of Health and Human Services

To view the photo associated with this press release, please visit the following link - http://www.marketwire.com/library/20100929-park800.jpg

To view the video associated with this press release, please visit the following link - http://www.youtube.com/parkinsonsuk#p/u/0/cGedC23Gr98

Contact Information

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    For more information, images or interviews with case studies
    and researchers, contact Victoria Webster
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