Experiences of Health Service Access and Use for People Living with Parkinson’s Disease in Ireland: A National Survey

Abstract

Background. Despite the growing prevalence of Parkinson’s disease (PD) and the need to plan for future health service provision, little is known in the Irish context about PD patients’ experiences of service access/use. Methods. A cross-sectional survey, with multiple formats, i.e., online, pen-and-paper, and telephone. Data were collected from May 2020 to July 2021 using a multipronged recruitment strategy. The survey was completed by people with PD alone or with the support of a carer/support person. Results. A total of 1402 responses were included. Over half (53%) were male. Approx. 10% were diagnosed with young-onset PD. A minority (6%) reported attending only their GP to manage their PD, with the rest attending a generic or specialist outpatient clinic. Almost 1-in-5 reported it took more than 12 months to obtain the diagnosis. Most were diagnosed by neurologists (84%), followed by GPs (8%) and geriatricians (7%); 1% indicated “other.” Of those diagnosed privately, 37% of these patients subsequently switched to the public system for ongoing management. The majority (97%) reported currently taking PD medications, but just 52% believed these were working effectively. Access to the range of health and social care professionals, including PD nurse specialists and clinical therapies is universally poor. Conclusions. A number of significant gaps in PD care are discussed, which require urgent attention. A reconfigured model of PD care is necessary to accommodate the growing need for specialist, integrated care at the population level. Specifically, more PD nurse specialists are needed within the public health system.