Research update: UCC Survey

The Parkinson’s Association of Ireland (PAI) welcomes the results of a survey which was published by UCC this week, as part of their wider mapping project. The survey sought to understand the services available to people with Parkinson’s Disease (PD) and how people with PD access them. The principal researchers were Prof. Suzanne Timmons and Dr. Emma O’Shea of University College Cork.

There were over 1,400 responses to the survey, 68% of which were current or former members of PAI.

The results of note included:

Diagnosis:

For 1 in 5 respondents, it took longer than 12 months to receive a diagnosis. 22% said that how the diagnosis was relayed was unacceptable.

Early-onset:

People with early-onset PD were significantly less satisfied.

Access to consultants:

43% of respondents only attended a consultant either once per year or less. Those attending a private consultant were seen significantly more frequently.

Access to other services:

There was an overall lack of access to nurse specialists and clinical therapists.

Urban versus rural:

Participants in rural areas were more underserved than those in urban areas.

Speaking to PAI this week, Dr. Emma O’Shea commented: “What the results tell us is that PD care is significantly under-resourced which affects diagnosis and ongoing care.”

The results of this survey will assist PAI in it’s calls on senior decision makers to prioritise PD care.

PAI would also like to thank the efforts of it’s Cork branch members for their role as patient advocates as part of the study.

The project was fully funded by the Health Research Board in 2019 and PAI was delighted to be the co-applicant on the funding application.