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

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

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

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

Synopsis

Many health, education and social service initiatives aim to implement better multi-agency working between agencies and professionals. But what difference does this sort of organisational change make to those families and children on the receiving end? Making a difference? explores the process and impact of multi-agency working on disabled children with complex health care needs and the families and professionals who support them. Examining in detail the work of six multi-agency services, the report describes the process of multi-agency working, key success factors, and outcomes for professionals, as well as the impact on families in terms of their daily life, well-being, and contact with services and professionals. A concluding chapter summarises key issues and makes recommendations for policy and practice.

Excerpt

The Family Fund champions an inclusive society where families with severely disabled or seriously ill children have choices and the opportunity to enjoy ordinary life. It is particularly fitting that our 30th anniversary should be marked by the publication of Making a difference?, commissioned by us from the Norah Fry Research Centre and financed by the Community Fund, which looks at multi-agency working in services to children with complex health care needs. the findings of the study suggest that services have responded well to the health and educational needs of these children. But the overall message from families is that the ordinariness of family life is still a long way from being achieved for these children.

Basic rights – to communicate, to develop and maintain relationships, to participate in leisure activities – are not available to the children and young people in this study. the caring agencies seem to be overwhelmed by the technology around the child and lose sight of the basics. and carers exhausted by ‘keeping the show on the road’, and rarely enjoying an uninterrupted night’s sleep have few opportunities to parent their children in a relaxed and ordinary way.

Please read this report, particularly what children and families have to say. Families should be at the heart of the planning, delivery and review processes, at local, regional and national level. But the evidence from this study is that multi-agency working practices exclude parents and carers. the impact of agencies on family life needs to be given paramount consideration and the agencies’ primary concern should be the outcome of the arrangements for the child’s care on the family as a whole.

And let us keep in mind the breadth of public and private sector agencies and businesses that need to be supported in offering an inclusive service to families. If you do nothing else, ponder on the young man who saw it as his job to make it possible for one family to enjoy a rare moment of enjoyment together:

“We went once to the ice rink and this young man
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.” (p 46)

This young man is a champion for inclusion, just as parents and carers are champions and, as this work shows, many health and social care workers are. Somehow, we have to find ways of harnessing champions within an environment that enables and sustains them and encourages the generalisation of their individual enthusiasm and commitment.

We closed down long-stay hospital wards because family life is the right of all children. the responsibility now is to ensure that we do not rebuild the institution within the family.

Marion Lowe Chief Executive, Family Fund

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