This policy statement has been developed with advice and guidance from people with Parkinson's, the people who love and care for them, health and social care professionals and other experts.
What do we mean by long-term care?
Although there is no formal definition, we use it to mean care and support services in the community. That could be at home, in supported housing, residential care or in nursing homes.
As many of these services come under the umbrella of social care, rather than health, people may have to pay for this care.
I was told that when my elderly mother came home from hospital that they could not provide 2 careworkers to assist in getting her up and putting her to bed…1 carer could not manage her on their own, therefore she had to go into a home. We had no other choices offered to us (she had advanced Parkinson's). There should be a wider range of choice, not ultimatums.
Family of someone with Parkinson's
What we believe
We believe that everyone who needs long-term care should get appropriate high quality support.
It's vital that there is a national system in each part of the UK that is fair, consistent, easy to understand and does not leave people bearing huge financial costs for their care.
We believe funding long-term care through tax or national insurance, with national entitlements to support, would be the best way to deliver a fairer system.
Benefits such as Attendance Allowance should stay separate from this system.
Why we believe this
Parkinson's can have a big impact on all aspects of daily living as the condition progresses. Many people with Parkinson's become increasingly reliant on care and support in order to maintain their quality of life.
However, people with Parkinson's face a number of barriers to integrated, long-term care. This includes the ability to access services, good information and advice.
There are many concerns around cost, quality and bureaucracy. And experiences of care can vary according to where a person lives.
What's the evidence?
There is clear evidence of unmet need among people with Parkinson's.
The Cost of Parkinson's (2017) report showed an average household in the UK where someone has Parkinson's is £16,582 out of pocket each year. Of this £3,622 were social care costs such as adaptations to the home, equipment to enable people to stay independent and assistance with daily tasks such as cleaning and shopping.
Research we commissioned in 2014 found that people with the condition and their carers were often unaware of social care and how to access it until they were in a crisis situation.
A Care and Support Alliance survey of over 4,000 adults in 2018 found that over a third had seen their health deteriorate as a result of not getting the care they need.
There is strong support from people with Parkinson's for a fairer funding system, based on national standards and entitlements, and much closer working between health and social care.