Article Text
Abstract
Background People with Parkinson’s disease and other movement disorders have complex physical and psychosocial needs. The need for access to specialist palliative care is recognised (NICE 2017) and has become a priority in UK health policy. A collaborative palliative movement disorders service employing a palliative movement disorders clinical nurse specialist was devised in Scarborough in 2010 between St Catherine’s Hospice and Scarborough Hospital movement disorders department.
We evaluated the ongoing value of this service in terms of holistic assessment, advance care planning, unplanned hospital admissions and access to specialist palliative care.
Methods A retrospective case note review of all patients known to the movement disorders service who died in 2018–2019 (n=131). Comparisons were made between patients under the care of the specialist palliative movement disorders service and those solely known to the movement disorders service.
Results 93% of patients under the neurology palliative care service had a psychosocial needs assessment, compared with 19% of those under the movement disorders team. Those under the palliative care service were both twice as likely to have an advance care plan documented in their primary care record and to achieve their preferred place of death. Access to all specialist palliative care services was greater in those patients who were known to the palliative movement disorders team.
Conclusions Our movement disorders palliative care service promotes holistic assessment of complex needs, access to specialist palliative care services, and opportunities for effective advance care planning. 16 ‘gold standards’ of palliative care for patients with Parkinson’s disease have recently been suggested, which we hope to use to further evaluate and develop our work. We hope to inform and inspire other areas who may be considering establishing a similar service.