NHS continuing care - our policy statement

Find out what we believe about NHS continuing care.

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 is NHS continuing care?

NHS continuing care 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 care 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 care, 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 care criteria.

However there are a number of barriers that exist in accessing NHS continuing care. These include:

• lack of public awareness
• a variation in what people experience in terms of assessment and eligibility
• a lack of understanding amongst 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 care.

It's still the case that people with Parkinson's and their families continue to report barriers to accessing NHS continuing care, despite the introduction of national guidance in England, Scotland and Wales.

Full policy statement

Parkinson's UK policy statement: NHS continuing care (PDF, 143KB)

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