Background: Parkinson's disease (PD) is a common neurodegenerative condition. Despite the recognised need for palliative care in PD, access to either generic or specialist palliative care (SPC) remains poor. Integrated SPC models of care have been described in other conditions. We report the experience of a novel service integrating SPC services for people with PD.
Innovation: The Scarborough integrated PD SPC service is a joint venture between St Catherine's hospice and the movement disorder clinic at Scarborough General Hospital. Patients with potential palliative care needs are discussed at a monthly multi-disciplinary team meeting with representation from Elderly and palliative care teams.
Evaluation: We retrospectively reviewed the case notes of all 47 patients (34 Male, Ave. Age 77 years) referred for SPC since the service started (30 months). At referral average disease duration was 85 months (range 5-321), mean L-dopa dose was 482mg and 34% of patients were in 24 hour care. Common triggers for referral included; complex symptoms (81%), future care planning (79%) and aspiration pneumonia /dysphagia (30%). Most carers had evidence of strain (88%) and most patients did not retain capacity for complex decision making (81%). 23 patients died and place of death was known for 22; with only 13% of deaths occurring in acute hospital beds (Care home 34%, Hospice 26%, Own home 13%, Hospital palliative care bed 8%).
Conclusions: Access to SPC for PD is achievable in a district general setting. Experience so far indicates a dramatic reduction in death in hospital and increased deaths at home/hospice compared with previous UK data (Snell K et al. Age and Aging 2009; 38(5): 617-19). Cognitive impairment and 24 hour care were common, suggesting referral late in disease. Important triggers to consider referral for SPC include; carer support, future care planning, management of complex persistent symptoms and terminal care.