National Information & Referral Centre
Since Parkinson Society Canada initiated the National Information & Referral Centre – 1-800-565-3000 – in 2001, over 12,000 people have been directly counselled and given up-to-date information on Parkinson’s disease, the latest research findings, treatment and care management.
In addition, the Parkinson Society Canada’s bilingual website, www.parkinson.ca, receives thousands of visitors every year who access educational, support and advocacy materials and use the site as a gateway to their regional Parkinson Society for direct service and ongoing support. The website is growing in popularity every month, and additional educational resources are added regularly.
Parkinson’s not only affects over 100,000 Canadians diagnosed with Parkinson’s, but affects their friends, families, care partners, health care professionals and the greater community. Every one of these groups needs specific and highly tailored information on Parkinson’s, treatment, care management and recent research findings. The National Information & Referral Centre ensures this critical information is available, both through direct contact by email or phone, or through the PSC website.
The National Information & Referral Centre allows people living with Parkinson’s to empower themselves by learning more about the disease. As one caller, diagnosed with Parkinson’s at age 53, described: “Being informed gave me a sense of control at a time when everything seemed to be out of control”.
Since it was launched in 2001, clients have changed the way they interact with the Centre: email inquiries increased by 400% from 2005 to 2008, and the majority of people who contact us learned about the resource from the PSC website. To accommodate these changes, PSC re-designed its national website in 2008, resulting in traffic increasing 100% in 2009. Over the past 8 months, the Support and Education section has received over 7,000 hits: visitors are downloading pamphlets, brochures, watching our webinars and making inquiries to the general information mailbox. Visitors are also using the national site as a gateway to finding support services and programs in their communities. In the past 8 months, over 27,000 visitors accessed their regional Parkinson Society.
As part of our promise to represent people with Parkinson’s, we brought the World Health Organization’s Global Declaration on Parkinson’s Disease to Canada in 2003. This charter of rights for people with Parkinson’s calls on governments to acknowledge that people with Parkinson’s have the right to:
- be referred to a doctor with a special interest in Parkinson’s disease;
- receive an accurate diagnosis;
- have access to support services;
- receive continuous care; and
- take part in managing the illness
The document has been signed by numerous members of Parliament and hundreds of members of the Parkinson’s community. Its principles are embedded in our support programs across the country.
Our long history of speaking on behalf of the over 100,000 Canadians living with Parkinson’s includes visiting Ottawa on numerous occasions to lobby for recognition of the need to change legislation and policies that affect the day-to-day lives of people with Parkinson’s.
We have identified key policy issues. We have also advocated to have stem cell legislation passed in Canada and are currently lobbying the federal government to create legislation protecting against genetic discrimination.
Through our national advocacy efforts and national communications strategies we are working with our regional Parkinson organizations to expand our reach and influence, grow our networks and continue to play a leadership role.
We have been instrumental in launching Neurological Health Charities Canada (NHCC) and are encouraged by the fact that, through our advocacy efforts at PSC and our leadership efforts on NHCC, we will continue to attract the attention of government.