Participation and Involvement: change the future of Parkinson’s, together

Share your voice to shape our work. Whatever your income, ethnicity or gender, we want anyone and everyone from the Parkinson's community to help us fight for a better life for people living with Parkinson’s.

What is Involvement?

Involvement means working in collaboration with people with Parkinson's and their loved ones to make strategic decisions, design services, plan events, and more.

This is your opportunity to combine your lived experience of Parkinson’s with skills you have developed throughout your life to help us better meet the needs of our community. You might even pick up some new skills along the way!

You can be involved for weeks, months or even years in many different projects. Some previous examples include reviewing grant applications, facilitating access to speech and language therapists, and developing unique support for remote communities in the Scottish Highlands.

Case study: Speak Up, Speak Out

Don't just take our word for it. Hear what involvement has meant to members of our community.

Speak Up, Speak Out is a voice support programme based in Northern Ireland for people living with Parkinson’s. The Speak Up, Speak Out working group was set up to get the programme off the ground and brought together a multidisciplinary team and a range of perspectives. 

The aim

Provide access to professional support for people living with Parkinson's who are experiencing voice issues. Difficult to access speech and language therapists via the NHS and sessions are finite. Support is needed to navigate the psychological and physical challenges of voice and speech changes associated with Parkinson's.

The process

The working group comprised one member of staff, one person with Parkinson’s and 3 volunteer speech and language therapists. They met 6 times to discuss aims, practicalities, content and evaluation. All 3 speech and language therapists went through the formal process of applying to become Parkinson’s UK activity volunteers.

The response

Over 24 people living with Parkinson's have benefited from Speak Up, Speak Out sessions delivered by 4 volunteer speech and language therapists, completely free of charge. In recognition of their contribution, the 3 original therapists were awarded a Parkinson’s Volunteer Award.

Bill's story

Bill lives with Parkinson's and was part of the working group for the Speak Up, Speak Out project.

"It made me feel good. It was the right team that we got together. We had the right quality and quantity of working group members. I was very glad to be involved."

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.