Parkinson’s Movement (www.parkinsonsmovement.org) aims to rally the voices of people with Parkinson’s to ensure that those of us living with the condition have an influence, not just on our own lives but on the entire Parkinson’s agenda.
The Cure Parkinson's Trust
In Parkinson's, until very recently, healthcare has been based on the old paternalistic model in which decisions are largely made by neurologists, where necessary supported by other members of the health care team. Rarely have patients had any explicit role in decision-making. We also want to make Parkinson's more of a health care priority and this can only be achieved by raising the profile and number of Parkinson's advocates.
Patients are essential members of their own health management team. This is the first principle of Parkinson's Movement (PM). PM’s secondary purpose has been to convey the best science to patients and authoritative patient opinion to the medical profession and finally PM aims to push patient issues to the top of the research agenda.
Patients to become more involved in their healthcare decisions
Activities» Webinar series
» Online resources on the website
» Community activities
Encouraging patients to use self assessment tools for clinical appointments and long term hopefully improve quality of life for the individuals involved.
Convey the best science to patients and authoritative patient opinion to the medical profession
Activities» Research meetings and conferences
When the Parkinson's Movement website is the first place the medical profession and people with Parkinson's go online and by our increasing presence at scientific conferences.
Push patient issues to the top of the research agenda
Activities» Galvanize the patient voice and create an advocacy movement through the Parkinson's Movement websites.
This is a long term aim and one in which we are working with other Parkinson's charities, groups and communities to achieve.
Hopefully increased funding for Parkinson's research and a more informed patient community who are involved in their healthcare management.
As the site is run by people with Parkinson's ill health of key advocates could affect the project, however we are working with a number of advocates/key staff to minimize this risk.
Through our e-newsletters, individual letters with progress updates and our websites and annual review.
Budget - Project Cost: £100,000Loading graph....
Amount Heading Description £50,000 Core funding Staff, overheads and ongoing costs running costs £20,000 Fast responce project Develop a system (app) to allow fast response of patient opinion £15,000 Audit patient involvement Collate information on patient involvement on research and other committees £15,000 Best practice evaluation Collate information on the 'best practice' resources available for example self assessment tools
This project has a global reach
People with Parkinson's, family, friends and carers and members of the scientific and the healthcare communities.
We already have the global reach and with Dr Jon Stamford ( a neuroscientist who is living with Parkinson's) leading the project, we have a great team on board to make this a success.
Read more about the Charity running this project.
Staff , Advocates, Healthcare Professionals And The Scientific Community
All have to be involved to make this project a success.