People with Parkinson’s need more support to stay in work according to our research

Researchers at Oxford Brookes University have led a study to see how employment is affected after a Parkinson’s diagnosis and what support may have helped people to stay in work.

The study, led by Dr Johnny Collett from the Centre for Movement, Occupational and Rehabilitation Sciences (MOReS) at Oxford Brookes, involved researchers, healthcare providers and organisations supporting people with Parkinsons’ service providers from the UK, Italy, and Australia.

The study examined the issues affecting employment and economic consequences experienced by people living with Parkinson’s, surveying 692 adults from 28 European countries who were all living with Parkinson’s and who were in work when initially diagnosed.

The findings highlighted that people with Parkinson’s who are diagnosed at the time they are establishing their careers, or those of mid-working age risk losing many years of potential employment. The study also found that most people do not receive early intervention to be supported at work, and that people often perceive that if adaptations and flexibility in work environments were in place, they may have been able to remain in work.

The impact of Parkinson’s on working life

This latest study backs up fifteen years of previous research, by a range of experts, which found that five years after a diagnosis of Parkinson’s, approximately half of people are unemployed. This suggests that little has improved in terms of support to stay in work.

However, despite these earlier studies, Dr Collett and colleagues found that less than 25% of people they surveyed had received early help to manage their symptoms in the workplace. Measures identified to support people with Parkinson’s to stay in work included a more flexible working pattern, especially in those diagnosed younger. Most of those who were diagnosed younger also found problems with manual dexterity contributed to them leaving work. Previous research by MOReS into Parkinson's found an intervention to improve hand function beneficial and therefore specific interventions may be able to support individuals in work.

Fatigue was listed as the most frequently reported symptom causing people with Parkinson’s to leave their job, particularly for those who were diagnosed at the start or mid-way through their career.

Personal and moral imperative

Dr Collett, who is a Senior Lecturer in Clinical Exercise and Rehabilitation at Oxford Brookes, said: “This research was initiated by people with Parkinson’s, frustrated at the lack of consideration given to employment and support provided early after diagnosis."

“People often perceive Parkinson’s as a condition that affects people after they have already retired. However, many will be diagnosed with lots of years of potential employment ahead of them. Our data suggests that little has improved over the last 15 years in terms of enabling individuals to remain in work, and it has allowed us to identify potential ways that may help people remain in work through workplace modification or management of their symptoms.”

“It is important to consider that the study took place before the global pandemic and whilst the long-term consequences of this on working practices is unknown, rapid changes in working and the increased flexibility that employers seem to be retaining post-pandemic offer opportunity to support people in work. Although the issue is very complex, with personal circumstances and stage and nature of employment likely requiring individualised support, there is a personal and economic imperative to provide better support for people in work.”

The research was published in Disability and Rehabilitation.