SCIE Identifies Significant Disparities In Carer Participation

{mosimage} The opportunities for carers to influence the services that affect them can depend entirely on the cultures of their local authorities and primary care trusts. In a new position paper Working together: Carer participation in England, Wales and Northern Ireland, the Social Care Institute for Excellence (SCIE) has identified that while ‘carer participation’ has been on many agendas for some time, there is a lack of definitions or any shared understanding of what it should actually mean. The paper – based on a UK wide practice survey and a review of available literature –  found that many organisations don’t differentiate between participation and consultation, resulting in carers being consulted about decisions rather than involved in making them.

It suggests that the most effective participation schemes involve carers at all levels of decision making – including recruitment and funding issues.

Most interestingly, the research found substantial differences in the practices of primary care and health trusts (PCTs). Some trusts were at the forefront of creative schemes and innovative joint commissioning with social services departments, while others were likely to state that carer participation was not their ‘core business’.

Speaking about the paper, Head of Knowledge Services at SCIE, Amanda Edwards, said: “The report provides practical illustrations of the variety of ways in which service providers can work with carers and the need to make sure, through good feedback arrangements, that carers’ input can make a difference to service delivery. It is clear, however, that all statutory, voluntary and independent organisations need to concentrate less on ‘consultation’ and more on the meaningful participation of carers at both grass roots and strategic levels. Only then will we be able to fully evaluate the impact participation can have on positive outcomes for the lives of carers and users of services”.

Based on the premise that carers are experts in their own lives, this SCIE position paper was carer-led from the onset. It includes substantial links to further information and good practice examples. It will be useful for all organisations with a participation agenda.

You can download Position paper 05: Working together: Carer participation in England, Wales and Northern Ireland from