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Our policy work on social care reform

Social care is rarely out of the news. Plans for reform and the debate over how social care services such as homecare should be funded are ongoing across the UK.

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Why is this important?

Sign up to our Campaigns Network to take part in regular actions about the future of social care and other issues.

Social care can help people with Parkinson's continue with everyday activities such as work, family life and hobbies. Assistance with day-to-day living helps people with Parkinson's maintain mobility and independence.

Local authority social care teams can provide a wide range of supporting services to people with Parkinson's. These include:

  • home help, eg help with shopping or housework
  • meals on wheels
  • personal care, eg help with dressing or bathing
  • aids or adaptations
  • residential care

Our 2008 members' survey found that 1 in 5 of those who reported having personal care needs were not getting the support they needed. 1 in 10 people thought their home was unsuitable, due to stairs or steps or because it needed other adaptations.

It is essential that health and social services are delivered in a joined-up fashion with effective communication between professionals.

Social care reform news (England)

In July 2010 the Coalition Government announced the establishment of a Commission on Funding of Care and Support. Chaired by economist Andrew Dilnot, the Commission published its recommendations on how to stop people having to face 'catastrophic' costs for their care, even selling their own homes to pay for help.

It envisaged that people will have to pay out up to £35,000 for their care costs and then the state stepping in to help fund the remainder.

At a similar time the Law Commission also published a welcome set of recommendations to make the law on adult social care simpler.

After holding a further consultation, in July 2012 the Government published its response to these reports in a White Paper, progress report on funding and draft Care and Support Bill.

In 2013 the Government also announced that the cap on costs to older people for social care would be set at £72,000 (in 2016/17 prices when a cap will be introduced). It also introduced its Care Bill to parliament.

The proposals for a cap on care costs are complicated and there is some doubt that they will really protect people from having to sell their homes to pay for care, especially as people in residential care will still have to pay 'board and lodging' costs.

However the Care Bill should lead to some improvements to the current system for people afffected by Parkinson's.

  • If someone needs a certain level of care and support (which will be set out at a national level), they will be legally entitled to help wherever they live.
  • Carers will be treated as equal to the person they provide care for, by putting them on the same legal footing. This should mean more carers getting the support they need.
  • Better access to information and advice to help people get the care they need, including people who pay for their care “self-funders” who often get no such support.

For more information on all the detail of the Bill and what it means for people affected by Parkinson's, have a look at our briefing (PDF, 229KB).  

As a package of reform, the new legislation may not be in place until 2015, and the cap on care costs will not be introduced until 2016.

So for the foreseeable future, the current underfunded system of care will struggle on and people will be faced with huge sums for their care.

We and other charities are now considering next steps in the End the care crisis campaign and Parkinson's UK has provided a response to the draft Care and Support Bill.

Our 2013 news stories on social care

Care cap won't resolve care gap - 11 February 2013

In the March 2013 Budget the Government announced it would bring the cap on care costs forward one year from 2017 to 2016.

Our consultation responses

We respond to government and other consultations likely to affect people with Parkinson's and their carers.

Find out more

To find out more, contact our Policy and Service Improvement team on campaigns@parkinsons.org.uk or phone 020 7963 9307.

Find out more about how we are working to end the care crisis and improve support for carers and join in our campaigns.

You can also read our policy statements which include our position on how we believe the care system could change to benefit people affected by Parkinson's.