Revealed: the scandal of Parkinson’s patients being financially punished

Parkinsons-disease5

‚ÄčLiving with the illness not only takes a huge physical toll but also impacts financially to the detriment of family and friends 

20th July 2017 by Robert Armour 0 Comments

Thousands of people affected by Parkinson’s are struggling with financial losses of more than £16,000 every year, according to new research.

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.

Published today by Sheffield Hallam University and Parkinson’s UK, 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.

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, 46, who lives in Dundee, was diagnosed with Parkinson’s in 2013 and was quickly forced to retire as a healthcare assistant due to her symptoms.

She said: “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.

People are being penalised by heavily reduced incomes and forced to pay for a lifetime of mobility aids - Steve Ford

“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.

Ford continued: “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.”