Lived Experience Lead

Parkinson’s UK works with health and social care professionals to transform Parkinson’s services across the UK. 

We do this through the Parkinson’s UK Excellence Network (PEN), a network of over 7,000 health and care professionals with a shared vision: to build an expert Parkinson’s workforce and improve health and care services for people with Parkinson’s.

We bring together and support health and care professionals to share best practice, network and collaborate, share resources and education, and drive improvements to services for people with Parkinson’s and their loved ones.

To help us deliver our strategic aims, we are looking for a person with lived experience of Parkinson’s  to take on the role of Lived Experience Lead on a consultancy basis. 

About the role 

In this role, you’ll:

• Provide strategic guidance to the Parkinson’s UK team through the monthly Parkinson’s Excellence Network Steering Group.

• Bring expertise as a person with lived experience of Parkinson’s for Parkinson’s UK teams.

• Drive engagement and participation with the Excellence Network. 

• Inspire, challenge and collaborate with the health and social care professional community to drive significant improvements to Parkinson’s services.

• Act as an ambassador for the Excellence Network. 

• Attend the annual in-person PEN National and Regional Clinical Leads meeting.

• Support the PEN national calendar of events through attendance or promotion. This includes Excellence Hub meetings and other activities centred around our national priorities.

• Join relevant governance groups, including the UK Parkinson’s Audit Governance Board. 

What expertise you’ll bring:

• Have lived experience of Parkinson’s and awareness of how the condition presents itself for other people with Parkinson’s. 

• Be skilled in sharing insight and lived experience with a range of stakeholders to help inform decision making.

• Have an understanding of health and social care support to people with Parkinson’s  to support the strategic aims and objectives of Parkinson’s UK.

• This role does not require NHS Professional/Clinical experience, and we encourage applicants without a healthcare background to apply

This is an exciting time for Parkinson’s UK and we would love you to join us!

Please apply by sending us your CV, together with a detailed supporting statement which will fully demonstrate how you meet all the criteria of the role, as stated in the "What expertise you'll bring" section of the job description.

Interviews for this role will be held online via google meet from 17 June 2026.

Anyone can get Parkinson’s. It’s vital that the people who work for Parkinson’s UK are representative of our diverse community. We actively encourage people from all sections of the community to apply, regardless of race, ethnicity, gender identity, age, disability, sexual orientation, or religion.