For help with a story or to find an expert: 0114 225 2811

Research reveals the hidden £16,000 price tag of Parkinson’s

Media centre home > News > Research reveals the hidden £16,000 price tag of Parkinson’s

Issued:20/07/17

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.

The 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.

Steve Ford, Chief Executive at Parkinson’s UK said: “For the first time, this research has exposed the full financial impact of Parkinson’s, and it’s shocking that people affected by the condition are being hit by such devastating losses – especially at a time when families are already feeling the strain.

“People are being penalised by heavily reduced incomes and forced to pay for a lifetime of mobility aids, home alterations and care costs - all while battling a debilitating progressive condition, for which there is no cure.”

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.

Anna says: “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.

Cost of Parkinson

Click to view the image

“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.

“It’s a struggle. My Parkinson’s has deteriorated and now it affects my entire right side, which makes everything more difficult. I have to use a walking stick – which I paid for myself – to help me to get around. 

“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.”

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.

Steve Ford continued: “This report has uncovered an impossible scenario being faced by thousands of people affected by Parkinson’s. Every day, people are being forced to choose between being out of pocket, or sacrificing their health – and it’s having a significant impact on their wellbeing. More must be done to address inconsistencies in services and funding available to households affected by the condition across the UK.

“With a stretched NHS and social care services, and changes to welfare support, it is crucial that the government works with us, and people affected by Parkinson’s, to develop solutions and improve the public services we all rely on.”

Principal investigator, Dr Anil Gumber from Sheffield Hallam University’s Faculty of Health and Wellbeing, said: “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.”

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