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The concept of integrated services and multi-agency working underpin many recent policy initiatives and are central to the government's green paper Every Child Matters. Working in partnership is also a key mechanism for delivery of services to children at risk of poverty and social exclusion in the UK through projects like Sure Start and Children's Fund initiatives.

Co-ordinated support is especially important for disabled children and essential for those with the most complex needs. Their needs and those of their families are continually crossing agency and service boundaries. Years of research have shown that one of the greatest pressures faced by these families is their contact with poorly co-ordinated services.

In response, many projects have been established throughout the UK that aim to implement better joint work and improve the quality of life for service users. However, there have been relatively few research studies that have examined the impact of multi-agency working. Does it really make a difference? The Working Together? research project based at the Norah Fry Research Centre, University of Bristol looked at the process and at the impact of multi-agency working for three groups of people:

• Disabled children with complex health care needs (for the purposes of this study, we mean disabled children who were reliant on a form of medical technology).
• Their families.
• The professionals that support them.

We found significant successes in working together to promote the health and educational needs of this group of children. All but one of the children were living at home and attending school. This says a lot about the commitment of these professionals and families. We know from previous research that as little as five years ago, families were having a much tougher time - health care needs were only sporadically supported and children were often not having access to a full education.¹

For their part, professionals were positive about being part of multi-agency services and reported improvements to their working lives in areas such as:

• Gaining new skills and knowledge from working more collaboratively with colleagues from other backgrounds. Staff reported greater insight into the work of other agencies.
• A changing sense of professional identity: "We are more generic in our rolesÉ there are huge benefits for familiesÉ we don't say, 'you'll have to wait for [somebody else] to come to do this', we just get on and do it ourselves. We're not precious about our professions."
• Better communication between staff and services and between staff and families.

The staff in our study who worked directly with children and families did not report a detrimental impact on their workload - if anything they felt that they were working more efficiently as they found successful shortcuts when problem-solving.

We always felt that the proof of the multi-agency pudding would be in the experience of families and children. Overall, families said that the services had made positive differences to them but their messages were complex and also challenging. While being part of a multi-agency service had led to some gains, these were not always sufficiently significant or positive for families. There were still big gaps in meeting families' social and emotional needs, as well as prolonged difficulties around physical adaptations to homes and obtaining equipment. Other key messages included:

• Families said access to services had improved, especially when supported by a keyworker. However, this rarely reduced significantly the continued duplications of assessments and reviews.
• Families often talked about their desire to have an "ordinary family life". Supporting children's complex health care needs at home and in the community is a great step forward - but we visited some family homes that looked like hospital wards and the effect on a family's day-to-day lives was enormous. For example, one mother told us that she felt more like a nurse than a mother - she felt on call 24 hours a day.
• Families wanted to do ordinary things together - as a whole family - but it was extremely rare for this to happen among the families we visited. Here's what one father told us: "We went once to the ice rink and this young lad who works there came up to us and said if he got some blankets and put them on a sledge would we like to bring our son on the ice. It was the rarest of moments - all four of us together doing one thing. It made such a difference."

We were concerned that for these children, a social model of disability had slipped off the agenda a little. Earlier this year, Barnardo's director Chris Hanvey rightly called for children such as those in our study to live at home and not in hospital wards.² We don't underestimate the challenges this poses for professionals but recreating the ward in the home is missing a wider point.

Unsurprisingly the disabled children that we spent time with had all the same aspirations as their non-disabled peers. They stressed their social and emotional needs and the desire to have some independence. But they faced significant barriers in relation to:

• Being supported with their communication needs.
• Having friends and access to social and leisure opportunities.
• Meeting professionals who took time to get to know them. Children told us how much they appreciated professionals talking to them - but this didn't seem to be happening very often.

Services in this study had risen to the challenges of multi-agency working and resisted the temptation to talk endlessly about the inherent difficulties - they have got on and done it in formal and thoughtful ways. There were real achievements for the staff in these services in terms of improvements to the quality of their working lives.

And there were some significant gains for families. While having children with complex health care needs at home was a challenge for families, it was still what they wanted more than anything else. But more attention needs to be paid to the range of challenges these children and families face. Services, in partnership with families, need to look closely at the overall quality of family life.

Multi-agency services which are able to address the social and emotional needs of families and children - and which support the leisure and friendship aspirations of disabled children with complex health care needs - have the potential to make both a positive and a significant difference.

David Abbott, Debby Watson and Ruth Townsley are researchers at the Norah Fry Research Centre, University of Bristol.

References

¹ R Townsley, C Robinson, Food for Thought: Effective Support for Families Caring for a Child Who is Tube-fed, Norah Fry Research Centre, 2000

² C Hanvey, "Room to breathe", Community Care, 15 January, 2004

Background Reading

1 R Townsley, D Abbott, D Watson, Making a Difference? Exploring the Impact of Multi-agency Working on Disabled Children with Complex Health Care Needs, their Families and the Professionals Who Support Them, The Policy Press, 2004

2 The Family Fund, All Together Better: A Guide for Families of a Disabled Child with Complex Health Care Needs, a free guide on how to get the best from services. It is available from the Family Fund and can be downloaded from their website: www.familyfund.org.uk

 

the research    BOXTEXT: The project was funded by the Community Fund and was carried out in partnership with the Family Fund, a charity that provides grants and information for families of severely disabled children and   young people   (see www.familyfund.org.uk for more information). Our research team spent a week   at a time in six multi-agency   services across the UK. Each service aimed to improve co-ordination   for disabled children and their families. Four services had included   a keyworker scheme as part of their service.  We interviewed 115 professionals from a range of disciplines and backgrounds, 25 families,   and 18 children and young people.