Many people have to fight for NHS continuing healthcare, but we believe access to free continuing care should be fair and consistent.
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 is NHS continuing healthcare?
NHS continuing healthcare is a package of professional care that is arranged and funded by the NHS.
It's free of charge to the person receiving the care and it's provided on an ongoing basis outside of hospital.
Eligibility rests not on the condition the person has, but on whether the need for care is primarily due to health needs.
There are complex criteria to judge eligibility.
What we believe
We believe it is unacceptable that many people have to fight for the NHS to fulfil its obligations to provide free continuing care.
We believe that fair and consistent access to NHS continuing healthcare for people with Parkinson's must be treated as a priority by all local and national policy makers.
This means raising public awareness of rights to NHS continuing healthcare, making sure the assessment takes full account of the symptoms of Parkinson's and enabling people to choose where they receive their care - be it in residential care or at home.
It also means dealing with the bureaucracy and delays that people often experience when applying for continuing care.
Why we believe this
The complex health needs that people with advanced Parkinson's have mean that some people are likely to meet NHS continuing healthcare criteria.
However there are a number of barriers that exist in accessing NHS continuing healthcare. These include:
- lack of public awareness
- a variation in what people experience in terms of assessment and eligibility
- a lack of understanding among assessors of the way Parkinson's can fluctuate
- bureaucracy and cost shunting between health and social care
- restricted choice as to where to receive the continuing care package (for example at home)
What's the evidence?
Unfortunately there is little data on the number of people with Parkinson's who are in receipt of NHS continuing healthcare.
It's still the case that people with Parkinson's and their families continue to report barriers to accessing NHS continuing healthcare, despite the introduction of national guidance in England, Scotland and Wales.
Full policy statement
Continuing Healthcare Alliance
The Continuing Healthcare Alliance is a group of charities and organisations who believe that NHS continuing healthcare needs to be improved.