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Fact sheet

Carer Involvement

Carer involvement and participation means carers being fully involved in service design, delivery and review – not simply relying on consultation. It places carers in a much more active role and should be based on power sharing.

Why involve carers?

Involving carers in planning and improving services makes good sense: they understand their needs and role. Carers undertake tasks and duties that most people don’t have the first idea about.

Talking to carers can also provide feedback about services that you could noy get in any other way. Apart from their obvious knowledge about their own needs, carers are very often best placed, next to the cared for themselves, to talk about the needs of services users.

They should be key partners in planning and commissioning not only carers’ services but also services for the cared for. Visit our Carers Services and Commissioning pages.

Health and social care legislation, policy and practice guidelines emphasise the need to involve users and carers in the planning and development of services and councils and health authorities have statutory duties to consult the public on a range of issues. As part of its modernisation agenda the government also plans to introduce a statutory ‘duty to involve’ local people in 2009. You can find out more about this on

The new LINks offer huge opportunities as well as strong levers to include carers among the groups who are involved. LINks are a key way of giving the community choice and control in health services, including highlighting the community’s needs. Carers should be a key group involved in every LINk. See Carers Trust guidance on LINks:

The Princess Royal Trust for Carers Position Statement - NHS Inspection levers (209 KB)

Over recent years, there have been a number of initiatives within the Scottish context that have had an impact on the role of carers. These include the Kerr Report – Building a Health service Fit for the Future 2005, The Care 21 Report – The Future of Unpaid Care in Scotland 2005, The NHS Carer Information Strategy 2006 and Changing Lives: Report of the 21st Century Social Work Review 2006. All of these reports stress the importance of the carer in delivering services to vulnerable members of the community.

Useful links:

The Journal of Integrated Care, published six times a year, the journal offers news, national policy and law concerning integrated care

Carers Speak Out – Carers Trust publication

Local Government and Public Involvement in Health (LGPIH) Act

SCIE Position paper 05: Working together: Carer participation in England, Wales and Northern Ireland, June 2006

The NHS Centre for Local Involvement , Local Involvement Networks

Listening to carers: DVD produced by the ACS Beacon Authorities

Do Health and Social Care Partnerships Deliver Good Outcomes to Service Users and Carers? Development of the User Defined Service Evaluation Toolkit

Scottish Government Users and Carers Reference Group minutes

East Ayrshire information and advice for carers