Agencies united

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 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.