Young carers and end of life services

Abstract

In 2009, the NHS National Centre for Involvement and Liverpool Primary Care Trust undertook a national pilot project to establish how best to undertake patient and public involvement in respect of end of life (EOL) services. This article describes the outcomes from its sub-project which focused on young carers. It is projected that there are substantial numbers of young carers in the UK, at any one point in time, supporting their (grand)parents, or other adult family members, during their terminal illness. Interviews with young carers were conducted to gain understanding of their experiences of EOL service delivery by carers and professionals, and what support they felt they needed themselves. It was found that young carers were often inadvertently marginalised and at times felt 'invisible' to those providing care to the patient. Young carers require the same consistent, accurate and honest information as adult carers. Carers and professionals need to talk and listen to them, and to recognise the importance of the whole family, in the care of the patient. Local young carer's services can provide support and information, but there are many organisations that could also provide greater support including schools, social services, and health professionals.