Road to good health

For a child living in poverty and deprivation in Wales, life can
be difficult enough. For those who have a special health need as
well, the stress on them and their family can be enormous.

“Special health needs”, according to a definition by the Welsh
assembly, covers children who are physically impaired, or who have
complex or chronic medical conditions, or children who have
emotional, behavioural or learning difficulties associated with a
diagnosed medical condition.

The health and social services committee of the assembly has spent
the last year taking evidence from those who work with such
children and from their families and carers. They have published
their findings and recommendations in a review of
services.¹ These highlight the need to make sure
children of disadvantaged families such as traveller families,
young lone parents and refugees, have better access to diagnostic
services so that fewer suffer from untreated health problems.

It comes as no surprise to find that children with special health
needs who also fall into the category of living in special
circumstances may have particular trouble accessing the services
they so desperately need to improve the quality of their lives. And
what has emerged over the past year is that although there is much
good work going on in Wales, there still is not enough evaluation
and benchmarking of projects, and some services such as speech
therapy are at crisis point.

While the Welsh assembly’s health and social services committee has
been looking at children’s special health needs in general, the
equal opportunities committee is carrying out a review of services
for travellers in Wales.

Research shows that traveller children are more likely than others
to have low birth weight, and ill-health due to environmental and
lifestyle factors. They experience more diarrhoea, asthma, greater
exposure to parasites, and a higher accident rate. There is also
some evidence of increased rates of certain genetic conditions due
to inter-marriage within some communities.

Plaid Cymru assembly member (AM), Helen Mary Jones, a member of the
equal opportunities committee, says children with special needs
have very patchy access to appropriate health care. She welcomes
the new health report, but warns that service provision needs to be
carefully tailored and culturally sensitive in order to meet the
needs of the traveller group. According to Jones, access to primary
care services on long-established traveller sites is generally
quite good.

But where the families are on less established sites or are camping
illegally, the picture is very different. Families often have great
difficulty in registering with a GP at all as travellers often
encounter what Jones describes as a wall of prejudice that makes
finding and using any services very difficult.

“We have had reports of mothers giving birth to their babies on the
road-side with no medical attention at all. This has happened not
necessarily because of difficulties obtaining medical services but
because the women have simply been too frightened to leave their
trailers because of the threat of eviction,” she says.

She says that children can easily miss out on even routine
monitoring in their early years with serious consequences for
long-term health, and when children have specific health problems,
travellers often feel they must try to meet the child’s needs
themselves.

Attendance at school, which is already a problem for traveller
children, may be more difficult for those with special health
needs. This, she says, is often due to fear among parents that
their children will be bullied or stigmatised because of their
condition.

Disabled children are also at risk of social exclusion, says Keith
Bowen, Wales manager of the charity Contact a Family, which
supports families with disabled children.

“We gave evidence to the health and social services committee on
the report and we raised the importance of early identification and
diagnosis for children with special health needs. The key factor is
that many parents are not able to access information and be put
into contact with the relevant services at the right time,” says
Bowen.

He highlights the feelings of isolation and shock that can
accompany diagnosis: “Where people are already socially excluded in
some way they may feel overwhelmed and isolated. Having the
information for a particular support group dealing with the
condition that the child has been diagnosed with can minimise that
isolation,” he says.

Bowen says that two of the most important recommendations of the
health and social services committee are that this group of
children should have access to play and leisure facilities.

The charity has found that although there is provision for
pre-school children older children who should be gaining some
independence have fewer opportunities for leisure activities. They
are also at risk of being isolated from peers who do not have
special health needs.

Alongside access to more leisure facilities, Bowen says that it is
vital that parents are offered good quality respite care.

Carys Davies is special needs health visitor co-ordinator at St
David’s Children’s Centre in Cardiff. Here, special needs health
visitors work with many families at risk of social exclusion
including asylum seekers and travellers. She too highlights the
need for respite care for families and carers and says that
children with special needs have limited access to local leisure
opportunities.

“I feel very strongly that at every opportunity children with
special health needs should be able to attend local activities,
whether it’s Cubs or Brownies or after-school clubs. But to do this
they need extra support and this is something that the assembly
report picks up,” she says.

“The effect of this is two-fold. It acts as a way of including
children who might otherwise remain at the margins of their own
communities, and it gives parents some respite.”

She adds: “It is also very important that we work with parents to
support and empower them. Often a child’s condition becomes
apparent over time. Pooling of resources and multi-disciplinary
working and great flexibility are required to support children and
again this is something that I welcome in the report.”

The assembly report on special health needs covers a huge area with
recommendations on eight key aspects of service provision. The
health minister at the Welsh assembly, Jane Hutt, is expected to
respond this month (February).

Major changes to health services in Wales are due to begin on 1
April this year, and there are also assembly elections in May. It
will be a struggle to keep this report’s recommendations on the
agenda against that backdrop of sweeping change, but crucial to
these vulnerable children’s future.

¹ Health and social services
committee, Review of Services For Children with Special Health
Needs, National Assembly for Wales, 2002

See website

www.wales.gov.uk/keypubassemhealth/content/reports/special/contents-e.htm

Flexibility needed

Key recommendations of Welsh assembly health and social services
committee’s report on the health needs of children with special
requirements

• Access to appropriate services should be made far more flexible
  for parents.
• Information at time of diagnosis should be planned in advance
  and be sensitive to parents’ needs.
• Parents and guardians should be given comprehensive advice from
  a designated and trained person at the time of diagnosis.
• The Welsh assembly should review the speech and language
  therapy service.
• Services should be made flexible to meet the differing needs of
  families.
• A comprehensive respite service should be available for all
  children.
• Care should be taken to ensure that aids, equipment and
  adaptations are fit for purpose and are child centred.
• Parents should be able to choose the type of school best suited
  to their child.
• A member of each local health board in Wales should be
  designated as responsible for children’s services and children’s
  rights.