Aspect 3: managing care for infants in
the community who need respiratory
support
According to the report, there is no
coordinated national data collection of the
numbers of children requiring long-term
ventilation support at home. Estimates are
of about 250–275 tracheostomy-ventilated
children managed out of hospital in England,
with a further 1000–1300 needing noninvasive
ventilation. Concern was expressed
that not all clinical commissioning groups
(CCGs) maintain specialist 24-hour, 7-day-aweek
specialist respiratory support and advice
to families. Some families reported a lack of
confidence when using care agencies. Staff,
they said, often seemed inexperienced—a
perception supported by comments from
some long-term ventilation network leads.
The report also found that:
‘There is variability across CCGs and
providers in the expected timescales
for discharge from hospital to home;
the information that is shared and
whom it is shared with; the frequency
of multidisciplinary team meetings
and reviews of home care packages;
and the processes to receive feedback
from parents or carers.’
CQC, 20