Participation and Involvement: change the future of Parkinson’s, together
Share your voice to shape our work. We're looking for anyone and everyone from the Parkinson's community to help us fight for a better life for people living with Parkinson’s.
Celebration Report 2024
We're celebrating the achievements of 2024's involvement projects and groups with our Participation and Involvement Celebration Report.
The report's goal is to enhance the visibility of this work, and share the voices and experiences of those who dedicate their time, energy, skills, and experience as volunteers.
The Parkinson's community powers everything we do.
Hear what involvement has meant to Anne.
Share your collective voice to shape the work of Parkinson’s UK through surveys, focus groups, user testing, and more. The decisions made based on the outcomes will be communicated and discussed with every member of the community who has dedicated their time.
Meet with a group on an ongoing basis in involvement panels, co-production activities, steering groups, and more. Leadership is shared and each person has an equal say in decision making. You will collectively lead on how and when changes are made based on your suggestions.
Case study: Parkinson's: Who cares?
In Northern Ireland, the Parkinson’s UK team have been working with carers to gather their thoughts and experiences of being a carer, which ultimately led to the publication of a report, ‘Parkinson's: Who cares?’
The aim
Create a report to highlight the challenges faced by the caregiving community and the inaccessibility of the Northern Irish Health Service. The report was to be presented at Stormont (Northern Ireland's main government site) by the contributors to the minister for Health and Members of the Legislative Assembly.
The process
42 people who supported someone living with Parkinson's took part in 7 different focus groups across Northern Ireland between November 2023 and May 2024. Their powerful and emotional testimonials formed the basis for the report which identified the key issues that needed addressing urgently. The report was presented to Parkinson's UK employees at the end of May, and released in June to political representatives.
The response
Parkinson's UK has requested a strategy to help carry out the review's suggestions, including the necessary financial backing. We've urged the Northern Ireland executive to speed up the completion of the Regional Review of Neurology.
Maureen's story
Maureen cares for her husband, Patrick, who lives with Parkinson's and was a key contributor to the group and subsequent report.
"Being a volunteer within the carers group opened up the door into a different part of the Parkinson's community. I have built up a new network of friends who share common goals as carers for people living with Parkinson's. This, in turn, has made me determined to identify and raise awareness of problems that come with being a carer. I have come away feeling less isolated, more supported and knowing that Parkinson's UK is listening to us and offering hope and support for the future."
Contact us to get involved
When you're ready, we want to hear from you. Soon, you could be reading about what your voice has helped to achieve.
Email us about current opportunities or ask any questions about participation and involvement.