80 the Experience of Accessing Parkinson’s Disease Care: A Qualitative Interview Study

Abstract

Background Little is known about the experience of health service access amongst people living with PD in Ireland. Methods Semi-structured telephone interviews were conducted from April 2020–January 2021. Purposive maximum variation sampling was employed, to ensure diversity. Recruitment was multipronged; through voluntary support groups, social media outlets, local newspaper, magazine and radio advertising, and posters in nursing homes and GP offices. Interviews ranged from 30–90 minutes and were audio-recorded. The data were managed using NVivo12. A thematic analysis was applied. Results Twenty-two participants were interviewed. Four themes were identified relating to service access: 1) ‘The Two Waitlists’; 2) ‘Geographic Factors’; 3) ‘The Private-Public Switch’; and 4) ‘Discriminatory Practices’. Regarding theme 1, the lengthy public waiting list was a deterrent, leading many to pay out-of-pocket to obtain their PD diagnosis privately. However, many cannot afford to pay out-of-pocket, creating a distinct inequity in terms of timely access for those with fewer resources. Additionally, post-diagnosis, the wait times between outpatient follow-up visits is significantly greater for public patients. The second theme refers to the distribution of PD services across the country; the concept of the ‘postcode lottery’ was recurring. Substantial variation in service provision is evident, with rural areas being particularly under-served. The ‘Private-Public Switch’ refers to a pattern of transfer from the private to the public system, post-diagnosis, to access to the range of HSCPs necessary for optimal PD management. Finally, ‘Discriminatory Practices’ refers to perceived discrimination by referring healthcare professionals, at two levels, on the basis of 1) age, and/or 2) perceived severity of disability. Such practices can affect timely access to diagnosis, and ongoing integrated PD management. Conclusion The two-tier health system structure, along with under-provision of integrated, outpatient PD services in certain areas, and biases/lack of knowledge amongst referring healthcare professionals, have contributed differentially to inequities in access for public and private PD patients across Ireland.