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Carers' support - our policy statement

Find out what we believe about support for carers.

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 carers' support?

It is difficult to put into words the feeling of abandonment and loneliness I feel.

Carer giving evidence to the All Party Parliamentary Group for Parkinson's

We use the term carer to describe anyone who provides unpaid care and support to someone with Parkinson's.

Support for carers can include practical and financial support. It can also include services to help carers maintain their own health and wellbeing.

What we believe

We believe that addressing the needs of unpaid carers, including those who provide support to people with Parkinson's, must be treated as a priority by local and national policy makers.

This should be reflected through:

  • improved funding for services that can provide carers with a break from their caring responsibilities
  • better information and advice for carers on their rights
  • clear targets for improving support for carers locally and nationally
  • better financial and work related support for carers

Why we believe this

The support provided by partners, families and friends is essential to the wellbeing of people with Parkinson's.

However, those providing care do not currently get the recognition and help they need and frequently sufffer poor health themselves as a consequence.

What's the evidence?

Over 3,000 carers responded to our members' survey in 2007. From these responses, along with a series of focus groups in 2008 and an inquiry by the All Party Parliamentary Group for Parkinson's Disease in 2009, a pattern of common issues has emerged:

  • Carers are unware of their right to a local authority social services assessment.
  • Carers' health often gets worse as a result of caring.
  • There's a lack of respite breaks and emergency support services for carers.
  • Carers have financial concerns with giving up work and the low level of Carer's Allowance. And there are restrictions on who is eligible for this benefit.

Full policy statement

Parkinson's UK policy statement: Carers' support (PDF, 130KB)

Find out more

To find out more about our policy work please contact our Social Policy and Campaigns team on 020 7963 9307 or campaigns@parkinsons.org.uk