Uncovering patient voice in a Parkinson’s disease nurse specialist service at a neurosciences centre

<h3>Background</h3> Parkinson’s disease nurse specialists (PDNS) play a well-established role in the care of People with Parkinson’s (PwP). They provide continuity of care, symptom and medication reviews, and education and support for PwP and carers. NICE (2006) and Parkinson’s UK suggest a maximum caseload of 300 per PDNS, but this is commonly exceeded, impacting access to care. We conducted a survey within the PDNS service at a tertiary neuroscience unit, where one PDNS caseload exceeded 1000. <h3>Methods</h3> One survey was distributed to PwP attending clinic and another to consultant neurologists. Questions focused on benefits and challenges of the service, and included Likert scales and free-space questions. <h3>Results</h3> 27 patients and 11 consultant neurologists responded. All patients found the PDNS service helpful, and 84% wished to see their PDNS more, whereas only 15% wanted to see their neurologist more. The most cited benefit among patients and neurologists was ‘continuity of care’, and the most common barrier to access was ‘too busy’. <h3>Conclusion</h3> The PDNS service is valued by patients and neurologists, but demand for more frequent contact is limited by busy caseloads. A larger PDNS team will bring the service in line with national guidance and the expectations of service users.