Support for people with learning disabilities and complex needs

How was this done?

Review Teams went to find out how councils and primary care trusts, in those areas, were planning and buying services and support for people with learning disabilities and complex needs.

Each review team included an expert by experience, which is someone who uses services; a family carer of a person who has complex needs, a commissioner who already buys people's services and support; and people from each of the three Commissions.

What they found

Overall, staff were trying hard to make a difference to the lives of people with learning disabilities and complex needs. But much more needed to be done and more quickly as below:

People's rights

1. Person-centred plans

People with learning disabilities and complex needs should have person centred care plans that fit their individual needs. Each plan should support them to live a full life. Where there were good plans and these were being acted on they were making a real difference to people's lives. But we found that many people had poor plans or didn't have plans at all.

2. Direct Payments

Since 1997 people who use services can ask to have Direct Payments so that they can plan and buy services and support for themselves.

Even though councils were doing lots to tell people about Direct Payments, not many people with learning disabilities and complex needs were getting them. Many people told us that they would like to get them.

3. Advocacy

People who find it hard to talk to other people should have good advocacy services. Advocacy is when someone finds out what you want and speaks for you.

Many people and their family carers could not get good advocacy services. They also found it hard to get information that they could understand about advocacy services.

4. Family carers

Lots of family carers did not have assessments of their own needs. There was not a lot of support for them, such as short-term breaks.

Only a few family carers were involved in planning services and saying what the services were like. Where this happened it was good.

What the three Commissions would like to see happen

This is one of our last reports before the three organisations become one which is called the Care Quality Commission (CQC) (April 2009).

We have three overall points that we want the health and social care organisations and the new Care Quality Commission to do to support Valuing People Now.

1. NHS and social care people must make sure that the way they plan and buy services is the same as what Valuing People Now says and is meeting people's needs.

2. Councils and the NHS should make sure that all services and support are personal to the individual. All services and support no matter where this is taking place must be shaped around the person who is using them. This is called personalisation.

3. We would like CQC to check that people, who plan, buy and provide services are giving what is needed to people with learning disabilities and complex needs.

The CQC must say which councils and primary care trusts are not doing well enough for all people with learning disabilities and expect improvements.