Campaign to end the care crisis

We're campaigning for urgent reform of the care and support system in England.

Older and disabled people and their families are going without essential care and often face catastrophic care bills.

We're working with 50 other charities, as part of the Care and Support Alliance, to call for reform of adult social care.

People with Parkinson's and carers have been actively lobbying their MPs and meeting them in parliament to get the message over about the crisis in our care system. As a result of this pressure, in July 2012 the coalition government finally produced proposals for reform.

In early 2013 it also announced it would introduce a cap on the lifetime care costs of individuals - regardless of means.

And in May 2013, shortly after the Queen's Speech, a Care Bill was published and is now going through parliament.

Not soon enough

The Care Bill has some good proposals to help people with Parkinson's and their families. It introduces more rights for carers, better information and advice, national eligibility criteria so people with the same needs should get help wherever they live, and a cap on the unlimited costs that some people can face when paying for care.

It seems that both funding and legislation to make the reforms a reality might not happen until the next parliament (2015). And the cap will not be introduced to 2016. You can read more about what the Care Bill might mean for people affected by Parkinson's and our views on the detail on our social care reform page.

Nor will there be enough money pumped into the system now to stop the cycle of cuts and extra charges that people are having to pay to keep the help they need.

We, along with many other charities, are considering what we can do to end the care crisis sooner - people affected by Parkinson's cannot wait the next few years for change.

Social care for people with Parkinson's

The type of social care people with Parkinson's need can include:

• personal care and practical help in their own home
• aids and adaptations to help people keep independent
• supportive environments such as day centres and residential care homes

Our 2008 members' survey found, however, that many people with Parkinson's were not getting the care and support they need.

There was also huge variation in services depending on where people lived.

Since our survey, there have been more cuts to social care.

This means even more people are not getting help, and there are concerns about the quality and cost of services.

Our work on social care policy

Read more about our work and submissions on these issues:

• Our policy pages on social care reform and improving support for carers
• Parkinson's UK policy statements on important issues such as NHS continuing care and carers support.
• Addressing the inequalities of social care is also part of our Fair Care for Parkinson's campaign.

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