The Parkinson's Project
Download (PDF 1.24 MB)Summary of report content
Healthwatch East Riding of Yorkshire worked with Parkinson’s UK to understand challenges and improve support for the local Parkinson's community. Feedback was gathered from people with Parkinson's and their care partners between March and July 2025 through a mix of surveys, community engagements and discussions. Healthwatch actively engaged with 299 people during this project and 51 people completed a survey.
Key findings
The experience in getting a Parkinson's diagnosis is inconsistent. Many experience delays, often due to a lack of awareness of less obvious symptoms among primary care professionals. The communication of the diagnosis varies from compassionate to unsympathetic, with many people feeling unsupported and left to find information on their own.
Parkinson's Nurses are a highly valued service, with 92% of respondents reporting a positive experience. They are praised for their compassionate, holistic care and for being a crucial link to wider support. However, a key concern is that the six-month interval between appointments leaves many feeling the service is overstretched.
Parkinson's profoundly impacts daily life and independence. Beyond motor symptoms, challenges include fatigue, anxiety, and memory loss. A lack of public awareness of these "invisible" symptoms often leads to social isolation. The condition also creates a financial burden due to care costs and loss of income.
Peer support, particularly through Parkinson's UK groups, is seen as incredibly helpful for reducing isolation. However, awareness of the full range of available support is inconsistent; nearly a third of respondents were unaware of or unsure about the support offered by Parkinson's UK. Many people anticipate needing more practical help at home as their condition progresses.
The report highlights the contribution of carers, mostly spouses, whose relationships and identities are fundamentally changed by the condition. Their lives are dictated by medication schedules and fluctuating symptoms, leading to social isolation. Many carers are unaware of formal support services and express a need for respite and peer connection.