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

By Alan Roulstone, Val Hudson, Jeremy Kearney and Ailsa Martin, with Jon Warren

Published: June 2006

Context

The government has increasingly recognised the contribution that carers make to society through new legislation. Carers' involvement in the improvement of health and social care services in the UK is also a central part of the government's modernisation agenda. However, while carer participation and involvement is clearly on the agenda, the extent to which it is functioning and monitored and to which it impacts on the lives of carers is unclear.

Purpose

The paper aims to identify what is happening in the social care sector with the involvement of carers and the impact participation has had on service improvement. It complements Position paper 3: Has service user involvement made a difference to social care services?

Audience

The position paper is intended to help social services providers to work better with carers to develop social care services.

Messages from the position paper

What is not working well

• There is no shared standard practice or definition of carer participation. This can mean that carers are consulted about decisions rather than being directly involved in making them.
• Respite care is central to enabling carers to participate, however the literature strongly indicates a shortfall of provision against carers' expectations.
• Not enough is being done to identify and increase the participation of 'hidden' or marginalised carers. Not surprisingly, some of the most innovative work is being undertaken in areas with significant ethnic and cultural diversity.
• Funding and professional and organisational cultures are seen as obstructing consistent partnership working. Some organisations, especially health trusts, are felt not to perceive carer participation as 'core business'.
• Lack of resources was commonly cited by carers, carers' centre staff and statutory professionals as one of the main reasons for lack of involvement at individual carer level.
• Carers report difficulties contacting social work staff.
• Tight budgetary allocations may limit the extent to which carers' views are being turned into firm service outcomes.

What is working well

• Most well-established carer participation schemes involve carers at both strategic and grass-roots level, and include feedback mechanisms that ensure carer input makes a difference to service delivery.
• Funding individual carer's time was the prevalent form of resource support. This was paid either directly or through carers' organisations using the Carers Grant.
• More guidance networks could be useful in cementing best practice ideas into service standards and delivery.
• Some of the most creative inputs to carer-centred work are being undertaken by primary care trusts supporting substantial staffing input.
• In some local authorities 'modernisation and reform groups' are being used to embed carer participation.
• Some statutory organisations express the view that targets inspire more carer participation, but this could run the risk that issues outside statutory targets may not be addressed.
• There are some examples in the literature and in practice that point to creative joint commissioning and provision of carer participation support. Some of the most innovative activity is being funded and provided by social services departments, primary care trusts and health trusts, for example in the mental health and learning disability areas.
• Power sharing should lie at the heart of a progressive shift to the fullest carer participation.

Conclusion

The position paper shows that more needs to be known about:

• tools for evaluating effectiveness and impact of carer participation
• factors that mediate between strategic and grass-roots carer participation and impact on services
• what works in increasing the involvement of 'hidden' and marginalised carers (including lesbian and gay carers and carers of those with substance misuse problems)
• the 'expert carer' phenomenon.