Introduction Patients with Parkinson’s disease (PWP) are told ‘you die with PD, not from it.’ Although these messages are intended to foster hope, PWP and their families can be unprepared for the challenges of advanced illness leading to missed opportunities to improve end-of-life care. Most experts agree that discussions about future care should be initiated in a timely way before cognitive impairment or communication problems arise however this often does not occur and there is a lack of a clear consensus about when and how this should be done.

Method(s) A survey exploring advance care planning in PWP was therefore conducted of a multidisciplinary group of professionals working with PWP across the North East of England

Results 28 completed the survey including 5 COTE consultants, 3 Neurology consultants, 2 COTE trainees, 11 PD Nurse Specialists and 1 AHP. Using a likert scale (1–5) they reported that they considered advance care planning in PD to be important (4.4), however were less comfortable in knowing when to discuss these issues (3) and less likely to report a clear approach as a team (2.9). A minority (2.1) reported quality training in advance care planning in the last 5 years. The respondents were asked to identify common barriers and identified a range of barriers with time and training being reported most frequently. The majority of respondents identified PD as a condition that patients could die from (25) and felt that as PD specialists they were best placed to lead these conversations with 14 reporting that the PD consultant was most appropriate, 10 the PD nurse.

Conclusions This highlights that professionals working with PWP clearly understand the importance of advance care planning and are keen to do so, but face a number of barriers including sufficient time and training to be able to deliver this.