Around 12,400 people in Scotland have a diagnosis of Parkinson’s, that’s approximately 1:500 of the population. In 2019 about 1,600 people in Scotland will be diagnosed with Parkinson’s which is a progressive, neurodegenerative disorder. The symptoms include resting tremor, slowness of movement and muscle stiffness. Parkinson’s can affect every area of daily living, including: talking, walking, balance, swallowing, the ability to smell and write, to name a few. The death of dopamine producing neurones leads to insufficient dopamine being produced. Dopamine is crucial in facilitating the brains control over movement.
Parkinson’s UK Scotland is a registered charity aiming to drive better care, treatment and quality of life for people living with Parkinson‘s. Their staff and teams of volunteers within local networks provide a wide range of support to those living with Parkinson’s, their families and carers together with activities and complimentary therapies such as Tai chi, Pilates, massage, walking, dancing, singing, adapted cycling and bowling. Local advisors also provide information and advice on benefit entitlement, employment issues, emotional support and signposting to other services and there is close working with Health and Social Care Staff in pursuit of good practice and care delivery. Parkinson’s UK fund research in pursuit of a cure and improved treatment.
Significantly less than half the people with Parkinson’s have a connection with Parkinson’s UK Scotland or take up any aspect of the support portfolio. There are specific populations who are difficult to engage leading to concern that they are not getting comprehensive, holistic, joined up care and treatment from statutory and third sector services. People affected by Parkinson’s who are not connected to Parkinson’s UK are missing out on the most comprehensive and holistic care available. These populations include people living in areas of deprivation, living alone or in care homes. Also, people from ethnic minority groups, those living in rural or large urban areas and individuals living with advanced Parkinson’s.
How can Parkinson’s UK Scotland reach these individuals? What type of approaches and strategy could be developed to enable Parkinson’s UK (Scotland) through the volunteer network, to connect with those who do not engage with the charity post diagnosis and address the issue of specific populations who are underserved.