Tell us your views on social care and funding in England

21 September 2012

We need to make the Government understand that reform of social care is urgently needed, but to help us do that, we need more personal stories from you that show the extent of the problems some people are facing.

Why do we need your views?

In July, the Former Secretary of State for Health, Andrew Lansley, announced the 'Caring for our Future White Paper and draft Bill', suggesting that it will bring about 'the biggest overhaul in care since 1948'.

The White Paper follows months of campaigning by many organisations including us and is based on an acceptance from Government that the current care and support system in England is in difficulty.

The Government want to hear your views on the draft Bill and we want to make sure that as many people living with Parkinson's are able to contribute to this important piece of legislation.

What's in the White Paper and draft Bill?

The proposals include:

• If you're a person with Parkinson's in need of care, or a carer of someone with Parkinson's, however you fund your care, there will be more entitlements to help from your council.
• A basic national threshold of care need over which anyone can expect some help, rather than 150 different councils each deciding what their own thresholds are.
• Reliable national information and advice to help people get the right tailored care for each individual.
• If you are someone paying for your own care, there will be a point when the state will step in and pay for your care costs instead, although the amount you will have had to have spent has not yet been decided.

However, a lot of the changes won't take place until 2015 at the earliest.

How can your story help?

We think the reform is much needed but would like to make it happen sooner. And we are not convinced the Government has covered everything that is wrong and needs changing about the care system.

We know that social care is really important to many people living with Parkinson's but we also know many people don't really know what it is, what they are entitled to, or are shocked to find they may have to pay for help.

Social care are services designed to improve your quality of life, assist your daily activities and keep you independent.

What we would like to find out from you

• Have you or a family member with Parkinson's had to sell their home to pay for your/their residential care?
• Have you been charged for care services or adaptations in your own home?
• Are you worried about not being eligible for care services either now or in the future?
• Do you know where to go to find out more about social care services?
• What are your concerns about accessing care services?
• Have you experienced cuts to social care services in your area and how have they affected you?
• Do you have concerns about the quality of care you have received in your home or in residential care?

Get in touch

Please get in touch for an informal chat by calling 0844 225 3643 or emailing campaigns@parkinsons.org.uk. All stories will be treated sensitively and your story will never be used without prior consent.

You can also share your views on the draft Care and Support Bill. The Government has opened this up for public comment by 19 October 2012.

• email
• Share