About the PD-Care Study

Supporting people with Parkinson’s to Live Well at home

This study aimed to improve the care of people with Parkinson’s who are living at home. Working in collaboration with people with Parkinson’s, the study team developed a new resource, the Live Well with Parkinson’s toolkit, available both online and as a paper version. 

The toolkit is designed to support both people with Parkinson’s and their carers to take an active role in managing their care. By encouraging more involvement in the mangement of their care and tailoring support to individual needs, the toolkit aims to promote more personalised care, reduce disability and hospital admissions, and improve quality of life. It also helps healthcare professionals deliver the best possible care.

The toolkit includes:

• Practical information on staying healthy and independent
• Guidance on what to do when problems arise and where to find support and access resources
• Advice on managing Parkinson’s symptoms with the help of healthcare professionals. 

To support its use, the study team also developed training for healthcare professionals, enabling them to confidently support people with Parkinson’s and their partners/carers to use the toolkit themselves.

Steps we’ve taken

As part of this project, the following work has been completed to achieve this: 

• Reviewed the evidence: Conducted a ystematic review of existing research, management guidelines, and self-management tools used for Parkinson’s and similar conditions.
• Engaged with stakeholders: Spoke with people living with Parkinson’s, their partners/carers, and healthcare professionals to understand their experiences, needs, and goals around self-management.
• Co-developed resources: Collaborated with experts and people with Parkinson’s to create a self-management toolkit and training programme for professionals.
• Tested feasibility: Tested the toolkit with 35 people with Parkinson’s to assess its feasibility and acceptability.
• Evaluating impact: : Completed a large randomised controlled trial to assess the toolkit’s effectiveness in making a positive difference to the health and lives of people with Parkinson’s. This included a cost-effectiveness analysis to determine if it would be suitable for the NHS and its partners.
• Implementation: If effective, promote the uptake and implementation of the toolkit into standard care

To see our key resources and findings, please click here