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.
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: NHS 10 Year Health Plan working group
In 2024, the government asked what should be in its 10 Year Health Plan for the NHS in England. The Parkinson's community has told them what needs to happen to improve their healthcare.
The aim
Include the voices of a representative group of people with Parkinson’s, their care partners and healthcare professionals in our response to the NHS 10 Year Health Plan.
The process
In October 2024, Parkinson’s UK’s Policy team hosted for a series of workshops with people who have lived experience of Parkinson’s. This included an in-person event with 20 attendees and a further 15 joining online.
The response
The group identified three priorities:
- Make sure everyone with Parkinson’s can access expert care, tailored to their needs.
- Use digital technology to improve care and NHS co-ordination while providing non-digital alternatives.
- Promote physical activity early on to help people stay well longer and reduce hospital admissions.
Colin's story
Colin is a London-based private barrister and Parkinson’s UK volunteer who supports people living with Parkinson’s in Personal Independence Payment appeals. He tells us about his experience of being part of the 10 Year Health Plan working group.
"During the NHS 10 Year Health Plan working group, the facilitators listened and helpfully chaired discussions, encouraging everyone to contribute. It’s key for Parkinson’s UK to work with people living with Parkinson’s on projects and share equal decision making in order to be inclusive. Being listened to helps and people with Parkinson’s come up with good, practical ideas. My advice is to get involved, to contribute, have your say, and learn from others."
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.