Understanding the experience of prescription charges in people living with parkinson’s disease: a focus group study

Abstract Background In England, people aged > 60 are typically required to pay for their prescriptions. Whilst exemption criteria enable people living with specified long-term health conditions to receive free prescriptions, Parkinson’s disease is omitted from this list. People with Parkinson’s are often reliant upon medications, and evidence suggests that medical fees can reduce quality of life and medicine adherence. We, therefore, aimed to explore the impact of prescription charges on people with Parkinson’s and their family care partners (caregivers). Methods This is a qualitative focus group study with people with Parkinson’s and caregivers. Focus groups were semi-structured and conducted online. Participants were recruited through opportunity sampling. Eligible participants were adults aged 18 and over living in England who either (1) had a diagnosis of Idiopathic Parkinson’s Disease or (2) provided unpaid care for someone with Parkinson’s, including parents, adult children, siblings, or close friends. Data was analysed using reflexive thematic analysis within a critical realist paradigm. Results Five focus groups were conducted with people with Parkinson’s ( n = 12) and caregivers ( n = 12). All focus groups comprised both people with Parkinson’s and caregivers. Thematic analysis identified three overarching themes: (1) The financial toll of medication and its ripple effects; (2) Lack of inclusion and support; and (3) Difficulties of seeking support. People affected by Parkinson’s disagreed with current policy and suggestions of per-prescription charge re-evaluation were expressed. Conclusions Prescription charges have multifaceted negative impacts on people affected by Parkinson’s. Current prescription charge policies, including their exemption criteria, should be reviewed, alongside initiatives to raise awareness of existing financial support systems, such as pre-payment certificates. Registration Study protocol and analysis strategy are pre-registered on Open Science Framework ( https://osf.io/y8ve5/ ).