Thousands of people affected by Parkinson’s are struggling with financial losses of more than £16,000 every year, according to new research published today by Sheffield Hallam University and charity Parkinson’s UK.
The Cost of Parkinson’s report shows that a household where a person is living with the condition loses around £319 per week on average (60% more than previously thought), due to a combination of reduced income and increased costs.
Dr Anil Gumber from the Faculty of Health and Wellbeing was Principal Investigator of the report whose findings reveal that half of those diagnosed with Parkinson’s, and one third of family members, have reduced their working hours, looked for more flexible roles or given up work entirely. Overall, households affected by the condition experience a loss of income averaging £10,731 per year, as a result of:
- People being unable to work or having to take early retirement (£6,013)
- A reduction in working hours by the person affected and/or by their carer (£1,981)
- Family members providing unpaid care without financial support (£1,235)
- Discontinuance of state benefits and pensions (£1,502)
This is in addition to mounting health and social care costs, which add up to an average of £5,851 per household across the year and include:
- assistance for daily living, such as transport and personal care (£2,088)
- energy costs (£572)
- healthcare related equipment and travel (£1959)
- adaptations to the home (£525)
The research comes at a time when families are already struggling to pay the bills, and shows that people affected by Parkinson’s are bearing the additional financial brunt of their diagnosis.
Currently around 127,000 people in the UK are living with Parkinson’s, an incurable, degenerative neurological condition which leaves people struggling to walk, talk and sleep.
Anna Cunningham is aged 46 and lives in Dundee. Anna was diagnosed with Parkinson’s in 2013 and was quickly forced to retire as a healthcare assistant due to her symptoms.
“Being diagnosed with Parkinson’s was a total shock. I was told I needed to retire early and it hit me like a ton of bricks. I have a small NHS pension, which brings in about £200 a month, and my husband works part time at the hospital, so financially it was very hard straight away. I applied for benefits, but the process took so long that for nearly a year we had hardly any money coming in. We live in a rented council house but we still had to pay full rent and council tax. We ended up falling into arrears and had to deal with a court summons. Now, I get Personal Independence Payments (PIP) and some Employment Support Allowance (ESA), but we’re still trying to pay off our rent arrears, so times are very tight.I miss my job, but I couldn’t work regular hours anymore. Now, I’m training up to be a volunteer educator for Parkinson’s – so I can help people understand more about the condition, what it is like to live with it and the full impact it has.” Anna Cunningham
The report also highlights a reduction in quality of life as the condition progresses. Most respondents with Parkinson’s had seen a decline in their health over the previous year, with two-thirds needing help with activities inside and outside the home.
In addition, it showed a worrying impact on wellbeing. Over 60 per cent of people with Parkinson’s and 55 per cent of carers who were surveyed scored as having low life satisfaction.
The charity is calling on Governments across England, Wales, Scotland and Northern Ireland to make changes to welfare support and increase social care investment, as well as proposing new policies and practices for employers so that people affected by Parkinson’s are supported to stay in work for as long as is appropriate.
“People affected by Parkinson’s and their informal carers, need support from the point of diagnosis to better understand the condition, and help plan how they cope in the long term. It is important that those with the condition are supported to stay positive and make contact with organisations that provide advice, guidance and support like Parkinson’s UK and we hope this study has helped to highlight the need for more to be done to support the rising number of people living with long-term health condition like Parkinson’s.” Dr Anil Gumber from Sheffield Hallam University’s Faculty of Health and Wellbeing
For more information: Sarah Duce in the University press office on 0114 225 4025 or email s.duce@shu.ac.uk or for access to case studies and charity spokespersons contact, Kirsty Callingham on 020 7963 9311 or email kcallingham@parkinsons.org.uk
