Putting people with Parkinson's in control: exploring the impact of quality social care

INTRODUCTION Parkinson’s is a progressive and incurable condition. Cost-effective social care services are a priority in the future delivery of adult social care. This study aimed to explore how the provision of quality social care interventions impacts on quality of life, health and wellbeing and future care costs for people with Parkinson’s and their carers. METHODS The study was conducted in three stages and adopted case study, individual interview and focus group methods. The research developed insight into social care needs and requirements, criteria for a segmentation model, pen portraits, an economic model, and a communications strategy. These are all available in the full report from Parkinson's UK. KEY FINDINGS Finding out and accessing what’s available There was a consistent theme that people with Parkinson's did not know what was available or how to access it in terms of social care. What’s important about social care Control, choice and maintaining independence emerged as important aspects of social care for all. Valued aspects of social care that were specific to Parkinson's requirements were that services: • Understand Parkinson’s • Understand medication (especially timing) • Allow the person with Parkinson’s time • Understand the person with Parkinson's is the expert • Recognise the impact of social inclusion • Have regular reassessment of needs relating to Parkinson's symptoms and treatment Benefits of social care Benefits of social care were interrelated - for example if there is a benefit to the person with Parkinson's (e.g. improved safety) this might reduce the burden for the carer, or result in the avoidance of wider societal costs such as residential care or hospital admissions. While some of the benefits take immediate effect, some of these benefits also have long term implications and can result in prevented events and reductions in the need for increased health and social care resource in the future. The Impact Gap The study developed the concept of the ‘Impact Gap’ illustrating how the costs of social care can be reduced by the timeliness and quality of "Parkinson's aware" social care.