The Disability Discrimination Act, a necessary, but not sufficient safeguard for people with progressive conditions in the workplace? The experiences of younger people with Parkinson's disease

Abstract

Purpose. This study explored the impact of Parkinson's disease (PD) on employment from the perspective of affected individuals. Particular attention was paid to factors that may affect the duration of employment after onset/diagnosis. Method. Data were collected in two phases, i) a postal survey (n = 339), and ii) one to one interviews (n = 24). Results. Four out of five participants reported that PD had made work difficult for them, only 15.3% had worked for more than five years post-diagnosis at the time of the survey. Several participants reported having experienced considerable stress prior to leaving work. Factors that precipitated withdrawal from the labour market included severity of symptoms, lack of support in the workplace, and opportunities for 'early retirement'. Factors associated with maintaining employment included age at diagnosis, support received from employers, and manipulation of drug therapy.Conclusions. It can be very difficult for people with PD to continue in paid employment for more than a few years post diagnosis. The relatively low level of contact between people with PD who were in employment and health professionals suggest that employment retention is not seen as major role for this group of professionals. There is a need for positive action to support people with progressive conditions in the workplace