Room to breathe

Naomi* was only four when her life was transformed. A fall led to a
blood clot and then respiratory failure. Her dependence on a
tracheostomy and catheter led to her being transferred to a
hospital far from home which made it difficult for her parents to
visit. Eventually, they came to the painful decision that they
could no longer care for her.

Naomi spent three and a half years in hospital before she was
fostered by Kate*, a nurse and member of the girl’s care team.
Inhabiting a world of hi-tech medicine and deprived of the company
of other children, Naomi had become depressed. Kate was approved as
a Barnardo’s short-break foster carer, as this was the quickest way
for Naomi to leave hospital.

Gradually Kate’s home was adapted. A care package for Naomi
involved two people providing 24-hour care and the day eventually
arrived when Kate and Naomi could live together permanently.

Naomi is now 12, goes to secondary school, attends a youth club and
is learning to make her own friends. She still uses a wheelchair,
needs oxygen 24 hours a day and ventilation at night, but none of
this has stopped her from riding a horse or abseiling with other
young people. Naomi’s story is told in a new Barnardo’s
publication, Breathing Space: Community Support for Children on
Long-term Ventilation.

Those familiar with Maureen Oswin’s work, such as The Empty
Hours,¹ will recall her accounts of children in
long-stay hospitals, condemned to a life of clinical care in which
creativity, spontaneity and exuberance were destroyed. Oswin’s work
vividly illustrates how human love, respect, stimulation and the
feeling of being valued are medicines as potent as basic physical
care. Now, with the wisdom of hindsight, we can only ask how, in
our lifetime, we allowed the situations she describes to happen.
Children on long-term ventilation, or dependent on other technology
represent, a group for whom this question still applies.

Although most children on long-term ventilation are eventually
cared for at home, with support from specialist resources (such as
Great Ormond Street’s transitional care unit), many spend a long
time in hospital because home care provision is patchy. In a study
of 18 children and young people, 15 had spent between two and six
years in hospital.² Of the remaining three, one was
still in hospital after three years awaiting a foster care
placement.

In 1997, the UK Paediatric Long-Term Ventilation Working Party
initiated a national database to register the number of children
needing assisted ventilation. From the information received, they
found that 136 under-16s were registered as needing long-term
ventilation. This figure rose to 241 in 2000 and is expected to
grow as more infants and children survive prematurity, accidents
and genetic conditions.

For Naomi’s parents, the strains of commuting to a distant hospital
led to the breakdown of the relationship with their daughter. But
even those who stay together face huge problems. Housing
adaptations take a long time to be agreed and funded. Necessary
adaptations to bathing facilities and wheelchair access are often
hampered by bureaucracy. Care packages agreed by health and social
services can take years to resolve and then there is sometimes a
further wait while suitable people are recruited and trained.

It might be argued that the ability of local services to respond to
care packages from specialised units, in acceptable time frames,
will be a touchstone against which the green paper, Every Child
Matters, will be judged. One tangible way to show that the
changes to children’s services are working will be the speed at
which such children can be discharged from hospital and into family
care.

Children on long-term ventilation are entitled to a childhood free
from hi-tech hospital wards and to what the USsociologist Robert
Perske describes as “the dignity of risk”.

* Names have been changed

Chris Hanvey is Barnardo’s UK director of operations.
Breathing Space: Community Support for Children on Long-term
Ventilation, from Barnardo’s, tel 01268 520224.


References

² J Noyes, “Enabling young ‘ventilator-dependent’ people
to express their views and experiences of their care in hospital”,
Journal of Advanced Nursing, 31 (5): 1206-15