Funding and delivering long-term care

Everyone who needs long-term care should get high quality support, wherever they are in the country, and without having to pay out huge costs.

This policy statement has been developed with advice and guidance from people affected by Parkinson's, 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. 

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. A survey of our members in 2007 found, for example, that of the 26% of people with Parkinson's who needed personal care services (such as help with dressing or bathing), 1 person in 5 (19%) was not receiving this support.

People with Parkinson's and their carers often do not know about the support available and their right to assessment. Our survey found that 7 out of 10 carers were not aware of their right to a carer's assessment.

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. 

Full policy statement 

Parkinson's UK policy statement: Funding and delivering long-term care (PDF, 160KB)