Letter from Jan Morrison to the Clerk
of the Committee (PC 30)
On behalf of Barnardo's I am submitting written
evidence on the Community Support Needs of children on long-term
Barnardo's is the UK's largest charity working
directly on an ongoing basis with over 50,000 children, young
people and their families in more than 300 projects.
In July 2003, Barnardo's held a seminar for
key professionals on the care of children on long-term ventilation.
A report was prepared for the seminar which included case studies
of children on long-term ventilation known to Barnardo's services.
I am enclosing extracts of that report which set out the background
summary of the issues arising from the case studies and from the
literature on long-term ventilation and a summary of what needs
to change in order to provide more equity and improved quality
of service provision.
The number of children
In 1997 the UK paediatric long-term ventilation
special interest group initiated a national database to register
the number of children requiring assisted ventilation. In 1997,
136 children under 16 years were registered as needing long-term
ventilation. This figure rose to 241 children in 2000an
increase of 77% in three years.
The number of children requiring long-term ventilation
is expected to grow significantly, as more infants and children
are surviving fatal diseases, accidents and genetic conditions.
In 2001 a report for the South West Regional
Paediatric Intensive Care Commissioning Group identified 15 children
using long-term ventilation in their region (Margolan, 2001).
This number was predicted to grow to 30 children within five years.
By 2003 this had already risen to 25 children (private conversation).
Care needs and disabilities
The reasons why children require long-term ventilation
differ and so do the nature and level of their disability and
care needs. However, for the majority of long-term ventilated
children, ventilation is only one of a range of medical needs.
Of the 15 children identified in the South West Region, 11 needed
help with feeding, 13 required assistance with toileting and 13
needed help with mobility (Margolan, 2001).
In hospital or at home?
The majority of long-term ventilated children
are eventually cared for at home. Of the 136 children registered
on the UK database in 1997, 93 were cared for at home while 43
children remained in hospital. Difficulties in recruiting home
care staff, funding issues and unsuitable housing were reported
as the main barriers to discharge (Jardine et al, 1999).
Long-term ventilated children often stay in
hospital for long periods. In one study of 18 children and young
people, 15 had spent between two and six years in hospital; of
the remaining three young people, one was still in hospital after
three years, awaiting a foster care placement (Noyes, 2000).
Going to school
Children and young people requiring long-term
ventilation often miss out on substantial parts of their education
due to extended hospitalisation (Jardine et al, 1999).
Sometimes the gap in schooling amounts to years, rather than months
All 81 children of school age living at home,
registered on the UK database in 1997, were going to school: 43
children (53%) attended mainstream schools, 36 went to special
needs schools, while 2 children had a home tutor. Fifteen of the
43 children remaining in hospital were of school age; of those,
3 children attended hospital schools and another 12 went to school
in the community during the day and returned to the hospital ward
at the end of the school day (Jardine et al, 1999).
The case studies presented here cannot be taken
to represent the experiences of all long-term ventilated children.The
four children in these case studies were identified through Barnardo's
services, and two of them were living with foster carers. This
reflects the type of children with whom Barnardo's worksnamely,
the most vulnerable children. Nevertheless we believe that some
of the issues highlighted here are common to many other long-term
ventilated children in Britain.
Issues for the children
All the children stayed longer than
necessary in hospital. They spent between 7 and 18 months (an
average of 13 months) longer than medically necessary.
Long-term ventilated children whofor
a multitude of reasonsare unable to live with their families
spend longer or indefinite periods in hospital. In some cases
they may lose contact with their families altogether.
Parents and carers described their
children as having become "institutionalised" as a result
of their prolonged hospitalisation. They had all endured periods
of isolation while in hospital. Being isolated from other children
had impacted on their social and emotional development A study
by Noyes of children and young people's view of being in hospital
supports this point She found that young people found it difficult
to get out and about and had "a sense of being in limbo and
socially excluded" (Noyes, 2000: 121 I ).
The children hated being in hospital
and often cried when taken back for medical appointments or readmissions.
The young people in Noyes's study also describe their boredom,
apathy and hatred of hospitals (ibid).
While they were in hospital the children
were vulnerable to a variety of infections. The physical health
of all the children improved significantly after they came home.
They had fewer hospital-acquired infections, such as MRSA, chest
infections, diarrhoea, colds and coughs. The overall amount of
time they spent on the ventilator was also reduced, with most
of them requiring only night-time ventilation.
Parents and carers highlighted the
social and emotional benefits of home care. Back at home the children
are described as "blooming" and having "come out
of themselves".Their personalities developed, they were able
to smile and they were clearly happy as a result of being in a
home environment with their families. This finding is supported
by Margolan's study which found that "the general health,
wellbeing and development of children on [longterm ventilation]
had significantly improved since being at home" (Margolan,
Attending school provided the children
with opportunities to interact and play with other children, which
again helped their sense of independence and belonging in the
The requirement that a carer is always
present both delays the discharge of the children and impacts
on their quality of life. This is particularly pertinent as they
reach adolescence and want to form personal relationships.
It is particularly difficult to maintain
an ordinary home environment, and long-term ventilated children
frequently experience a lack of privacy, choice and independence.
Issues for parents and carers
The provision of short breaks varies
significantly. However, all parents and full-time carers depend
on adequate short breaks in order to continue the care of their
children in the long term.
It is at times stressful and intrusive
having carers in your home, but parents and full-time carers recognise
their dependence on these workers. It is important for them to
find a balance between privacy and the need for support.
A number of other issues should be highlighted
from the literature on long-term ventilated children.
Long-term ventilated children who
are medically stable and ready to be discharged, block intensive
care beds for other ill children. A survey of 24 paediatric intensive
care units in the UK found that 18 of 152 beds (12%) were occupied
by long-term ventilated children (Fraser et al, 1997).
During the same period 143 children in the affected units were
refused admission. Had these beds not been occupied by long-term
ventilated children, an estimated extra 120 children could have
been admitted. James (1996) reports an even higher percentage
of bed blocking, with 42% of acute paediatric intensive care beds
in one NHS trust blocked by medically stable children dependent
on long-term ventilation.
Prolonged hospitalisation, especially
in distant regional or tertiary hospitals, increases the risk
of vulnerable families losing contact with their child and hence
their chance of returning home.
Long-term ventilated children and
young people are often excluded from the decision-making process
about their care and life. The rights of long-term ventilated
children, as described in the UN Convention on the Rights of the
Child, are frequently not respected in hospital (Noyes, 2000).
It is also difficult to uphold their rights to an ordinary family
life once they have been discharged.
The main barriers to a rapid discharge
are the difficulties in recruitment of home care staff, incomplete
funding, unsuitable housing (Jardine et al, 1999) and local
bureaucracy. Noyes also describes barriers, such as "attitudes
of professionals, lack of joint commissioning and accounting responsibilities,
general poor management both within the health service and in
collaborating with other services, complex social issues, housing
problems and a general lack of auditing and outcome measures"
(Noyes, 2002: 26).
The emerging findings of the National Service
Framework for Children in Hospital concerning Disabled Children
and Long Term Conditions state that
Families need a seamless child and family-centred
service that addresses all types of need, provides continuity
across all transitions in the child's family life, and is not
limited by separate agency roles and responsibilities. A diagnostic
and assessment process carried out promptly and leading to an
agreed multi-agency plan can best meet the family's needs. In
particular; many children require the timely provision of therapy
services and community equipment services to help encourage inclusion
in local community and the best possible developmental progress.
(Department of Health, 2003b: 27)
A number of things need to change if this standard
is to be reached.
The particular needs of children
on long-term ventilation must be a distinct focus of the ongoing
work of the development of the National Service Framework.
The ongoing care and support needs
of these children must be recognised in the development of children's
When children on long-term ventilation
are ready for discharge, continuing care protocols should be used
to ensure that they return home speedily.
As outlined in the emerging findings
of the National Service Framework, local multi-agency groups involving
health, social care and education should be set up at a senior
level in order to plan and commission services.
Guidance on complex home care packages
should be issued to overcome the transfer of funding issues from
acute services to primary care trusts and the inconsistencies
of funding within primary care trusts. The guidance should include
the provision of pooled budgets.
All long-term ventilated children
should have access to an identified and effective key worker system,
as outlined in the joint Department of Health/Department for Education
and Skills guidelines "Together from the Start" (2003).
Multi-agency plans for children on
long-term ventilation must acknowledge their educational needs
and be clear about how these are to be met.
While the vital importance of nursing
care should not be minimised, a balance between children's ongoing
nursing needs and their rights to a normal life must be achieved.This
will require a shift in culture concerning what are acceptable
and manageable levels of risk.