£15k a year... financial loss for sufferers of Parkinson's in NI laid bare
Thousands of people diagnosed with Parkinson's disease in Northern Ireland face a huge financial burden as households lose out by more than £15,000 every year, research has found.
The cost of living with Parkinson's has been laid bare in a new report showing that those with the condition lose out on around £300 a week.
There are currently 3,600 people in Northern Ireland with Parkinson's - an incurable, degenerative neurological condition that leaves people struggling to walk, talk and sleep.
Half of people diagnosed with Parkinson's and a third of their family members are forced to either reduce their working hours, search for more flexible roles or are forced to give up work entirely.
The research published by Sheffield Hallam University and charity Parkinson's UK shows that overall, households experience a loss of income averaging £10,731 per year.
This is as a result of people having their working hours reduced or being unable to work or having to take early retirement, and by family members providing unpaid care without financial support, discontinuance of State benefits and pensions.
This is in addition to mounting health and social care costs, which add up to an average of £5,851 per household in a year.
This includes assistance for daily living, such as transport and car, energy costs, healthcare, travel and adaptations to the family home.
The research comes at a time when families are already struggling to pay bills and shows that people affected by Parkinson's are bearing the financial brunt of their diagnosis.
Nicola Moore, country director at Parkinson's UK Northern Ireland said the research has exposed the full financial impact of the disease.
"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," she said.
"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."
The report also highlights a reduction in quality of life as the condition progresses.
Most sufferers experienced 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.
More than 60% of people with Parkinson's and 55% of carers who were surveyed reported having low life satisfaction.
The charity is calling on the next Stormont government to make changes to welfare support and increase social care investment.
Further, it wants new policies and practices for employers so that people affected by Parkinson's are supported in their ability to stay in work for as long as is appropriate.
Ms Moore continued: "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 across Northern Ireland.
"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."