What's the cost of living with Parkinson's?
A household affected by Parkinson's loses an average of £16,582 a year due to higher health and social care costs and reduced income.
This story was published in 2017 and may no longer be up to date. If you're struggling with the cost of living, visit our money, grants and benefits page to find out what support is available to you.
The research was commissioned by Parkinson's UK and the report was released on 20 July 2017 by Sheffield Hallam University.
The key findings
Households where someone has Parkinson's experience:
- higher health costs (£2,229) as they have to pay for items to help them live on a daily basis. These include things like pill timers, prescriptions (in England only), mobility aids and travel to health appointments, including parking charges
- higher social care costs (£3,622) as they pay towards changes to their homes, assistance with daily tasks such as cleaning and shopping, and for equipment to help them stay independent
- loss of income due to early retirement or reduced working hours (£10,731) because of the progression of the condition
- a decline in quality of life - over 60% of people with Parkinson's and 55% of carers who were surveyed scored low on a recognised wellbeing scale.
The cost of Parkinson's in each country
The report also shows that the exact cost of Parkinson's is different in each UK country as their governments, assemblies and parliaments set their own budgets.
Open each section below to find out more about the cost of Parkinson's in your country.
The findings of the research in England found that households where someone has Parkinson’s are £17,094 out of pocket each year.
This breaks down into:
- higher health costs (£2,297)
- higher social care costs (£3,704)
- loss of income due to early retirement or reduced working hours (£11,093)
The findings of the research in Northern Ireland found that households where someone has Parkinson’s are £15,045 out of pocket each year.
This breaks down into:
- higher health costs (£679)
- higher social care costs (£4,570)
- loss of income due to early retirement or reduced working hours (£9,796)
Download Cost of Parkinson's report - Northern Ireland (PDF, 750KB)
The findings of the research in Scotland found that households where someone has Parkinson’s are £13,375 out of pocket each year.
This breaks down into:
- higher health costs (£2,045)
- higher social care costs (£3,172)
- loss of income due to early retirement or reduced working hours (£8,158)
The findings of the research in Wales found that households where someone has Parkinson’s are £17,136 out of pocket each year.
This breaks down into:
- higher health costs (£1,861)
- higher social care costs (£3,249)
- loss of income due to early retirement or reduced working hours (£12,026)
"Shocking"
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."
Campaigning for improvements
The study has identified areas where government support isn't helping people living with the condition, so we'll use this research to focus our future campaigns.
We are now calling on governments across the UK to:
- make changes to welfare support
- increase investment in social care
- propose new policies and practices for employers so that people affected by Parkinson's are supported to stay in work for as long as they want to.
We will do this through our regular engagement with government, assemblies and parliaments across the UK and through the All-Party Parliamentary Group on Parkinson's.
How you can help
Make sure decision-makers across the UK understand the daily impact of living with Parkinson's by:
- joining our Campaigns Network
- sharing your story to raise awareness of what living with the condition is like and help us put pressure on governments across the UK to make changes that will make a real difference.
Download our Cost of Parkinson's report (PDF, 650KB)
Do you need information and support?
Many people with Parkinson's continue to work for a long time after diagnosis. However, you may need to make some adjustments.
If you have Parkinson's or care for someone who does, you may have concerns about how you will manage financially. But there is support available.
Our helpline and advisers can support anyone with Parkinson's, their family or friends. Call 0808 800 0303 to get in touch.