SCIE Guide 25: Having a break: good practice in short breaks for families with children who have complex health needs and disabilities

by Kristina Staley at TwoCan Associates.

The research was undertaken by Eleanor Layfield and Mary Sainsbury, Practice Development Managers at SCIE.

Published December 2008

Introduction

In December 2007 SCIE published 'Necessary stuff. The social care needs of children with complex health care needs and their families’ (Knowledge Review 18).  This outlined the evidence base for working with this group of children and their families. One of the key areas identified for further development was ‘short breaks’, a service which parents often request. It is a service that also needs to address several complex issues.

• Disabled children want to lead ordinary lives and relationships with their families and friends are very important to them. They do not always want to have breaks away from home without their families close by.
• Parents want practical, flexible help and may express the desire for a ‘breather’ from the physical and emotional demands of caring for their child. At the same time, they often express the wish that relationships between themselves and their disabled child could be more ‘ordinary’ and they did not always have to perform caring, nursing and other roles.

SCIE has carried out further research to gather information about innovative and imaginative practice in providing short breaks. The project involved:

• contacting a wide range of stakeholders with a request for examples of innovative practice, which they also distributed to their networks
• semi-structured telephone interviews and follow-up with respondents
• collection and collation of innovative practice examples.

This project was supported by The Council for Disabled Children at the National Children’s Bureau and the Aiming High Implementation Group. These groups also highlighted the importance of this topic, particularly as a new duty on local authorities to provide short breaks for disabled children was introduced in March 2008.

Who is this resource for?

This guide has been written for commissioners and service providers responsible for services for children with complex health care needs and their families. It has drawn upon the experience of organisations that have broken new ground in the area of short breaks for families such as these. By sharing these examples of good practice, SCIE hopes to facilitate the spread of more innovative and family-centered services.

If you would like further information about any of the services described in this guide, please contact Mary Sainsbury at SCIE (mary.sainsbury@scie.org.uk).

Acknowledgements

The organisations which contributed to this project were:

• Mid Essex Primary Care Trust (PCT)
• The Hamlet Centre Trust, Norwich
• West Hertfordshire PCT
• Nascot Lawn, Watford
• Norfolk County Council
• Rainbow Trust Children’s Charity, Leatherhead
• Shooting Star Children’s Hospice Hampton, Middlesex
• South East Essex PCT
• Southern Health & Social Services Board (SHSSB), Northern Ireland

SCIE would like to thank all those in the above organisations who provided the information about their work, and also Christine Lenehan, Director, Council for Disabled Children, for her support and advice.