Findings Of The Review Of Ben Chandra-Hills
FINDINGS OF THE REVIEW OF SERVICES PROVIDED TO BEN CHANDRA-HILLS
BACKGROUND INFORMATION
1. This report
outlines the findings and recommendations of the systems
review undertaken by Professor David Holdaway of health and
disability services provided to Ben Chandra-Hills and his
mother Jane Hyde-Hills. It also provides Ministry of Health
comment on the review report.
2. Professor Holdaway was
asked to conduct a systematic review of the services
provided to Ben Hills during his lifetime and the
involvement of his family in these services. Professor
Holdaway’s review is attached as Appendix 1. The terms of
reference for the review were to assess:
how and
when diagnoses were made of Ben’s conditions
the
adequacy of assessments which were carried out to ascertain
Ben and his family’s support needs
the
availability of health and disability services to meet these
needs as assessed
the services that Ben and his
family received and the quality of those services, having
regard to current professional and ethical
practice
the continuity of services provided and
the level of co-operation amongst health providers and
others to ensure quality and continuity of
services
the adequacy of consultation with Ben’s
family regarding the most appropriate care and treatment of
Ben.
3. For further background information on the
framework for the review see health report System Review re
Services for Benjamin Hills, dated 22 February 2000 (ref no.
20000364).
4. In addition to the systematic review of
services provided to Ben and his mother by Professor
Holdaway, a number of other reviews have been undertaken by
different agencies. The Department of Child, Youth and
Family Services has undertaken a review of their actions in
this case, and has forwarded their report to the
Commissioner for Children for review (as is standard
practice). The Coroner and Police have also investigated
Ben’s death. The Coroner’s report is attached as Appendix
2.
KEY FACTS
5. Ben was first admitted to Starship
Children’s Hospital on 4th June 1993, with a series of major
motor epileptic seizures. Ben was referred to a Consultant
Paediatrician who considered that he was not only
developmentally delayed but also hyperactive and suffering
from a complex form of epilepsy.
6. Ben’s diagnoses
included:
epilepsy - always severe and difficult
to control, requiring in the end, the use of three
anticonvulsants
developmental delay
behavioural difficulties - attention deficit hyperactivity
disorder (ADHD)
recurrent otitis
media
systolic heart murmur, first noted by
Ben’s GP and found to be of no significance by his
Paediatric Cardiologist
asthma and
eczema
the possibility of autism was raised mid
1998, but this diagnosis was never confirmed.
7. From his
first presentation at Starship Hospital it was recognised
that Ben’s behaviour and ADHD were major problems. He also
had a significant problem with poor sleeping patterns.
Attempts to admit Ben to Starship to fully assess his
pattern of behaviour failed. A number of behaviour
modification programmes were offered, but were unable to be
implemented due to circumstances in the family home.
8.
Ben was first referred to the Special Education Service by
Auckland Healthcare’s Child Development Unit in July 1993
when it was recognised that he exhibited significant
developmental delay and ADHD. The Department of Child,
Youth and Family Services became involved with Ben and his
mother in October 1994 when Ben was found by police in a
car, by himself, outside a hotel.
9. Between 10 and 18
hours per week of Home Care respite, as well as some home
help were established at various times, but there were
continuing problems over the six year period in finding
suitable placements and personnel for such a complex medical
and social situation. The Radical Respite Unit at Wilson
Home was very successful, but is only available for short
stays.
10. Ben had a number of case managers over the six
year period, however, none of them appear to have been in
communication with all of the agencies involved with Ben.
In 1999 an application was granted by the Health Funding
Authority (HFA) for a six month trial package to include
home help, home support, case management and behaviour
support. This package had not been implemented by the time
of Ben’s death on 6th February 2000, however, as there was
difficulty in arranging which organisation would fulfil the
case management role.
FINDINGS OF PROFESSOR HOLDAWAY’S
REVIEW
11. Although a number of services were offered
very soon after Ben’s presentation at Starship and referral
to the Auckland Healthcare’s Community Health Child and
Family Service, no comprehensive Needs Assessment, covering
health, education and social support issues appears to have
been carried out until November 1995. Staff from the
individual organisations did, however, recognise Ben’s
multiple needs.
12. A great deal of effort was put in by
a number of different organisations to achieve a
satisfactory support and respite package for Ben and his
mother. These efforts were frustrated by:
the
complexities of Ben’s management
his
epilepsy
his ADHD
his abnormal sleep
pattern, and
ongoing relationship problems
between health and education professionals and Mrs
Hyde-Hills.
13. Professor Holdaway concluded that the
medical services provided for the diagnosis and management
of Ben’s epilepsy were of a high standard. However, the
control of his epilepsy was complicated by the problems
Ben’s mother had in getting him to take his
medication.
14. Professor Holdaway also concluded that
all other health and disability services offered to Ben and
his mother were of a very high standard, limited only by a
lack of facilities and staffing. The only criticism was
that communication was sometimes lacking between the
different organisations, and they were not all involved in
making future management plans. No instances of unethical
behaviour were found.
15. There was an apparent breakdown
in continuity of case management in late 1993 when contact
between the social workers attached to Auckland Healthcare
Community Care and Ben and his mother ceased. Following Mrs
Hyde-Hills’ rejection of Auckland Healthcare social workers
the social work role was largely fulfilled by CCS and the
Special Education Service. Professor Holdaway found that
there did not seem to have been any formal arrangement for
Auckland Healthcare to be kept informed of changes in Ben’s
circumstances. However, once the first full Needs
Assessment was established in late 1995 there was much
greater continuity, and better co-operation between the
community organisations. Within the health services,
referrals were accepted and actioned appropriately, although
there seemed to have been quite long delays before Ben was
seen by the Child and Family Unit.
16. Throughout the
case record there is frequent reference to discussions with
Jane Hyde-Hills regarding Ben’s treatment and management.
The medical, educational and social support requirements for
Ben and his mother were extremely complex. The evidence is
that multiple agencies did their best to meet them within
the resources available in the Auckland region. Mrs
Hyde-Hills was asked to participate in a number of
programmes to overcome Ben’s abnormal behaviour. Each time
she indicated that she was unable to do so. Professor
Holdaway considers that the only feasible solution would
have been to have found suitable residential care within the
Auckland area where Mrs Hyde-Hills could maintain contact
with her son.
17. The lack of a designated case manager
who was in communication with all agencies, was a deficiency
in Ben’s case, particularly in the early years. Even at the
end of 1999 when the HFA approved funding for this role
there was still some difficulty in finding a suitable case
manager due to problems with one agency having a supervisory
role over the staff of another. The absence of a case
manager who co-ordinated all the agencies involved with Ben
may have been one factor in the lack of continuity of some
services to Ben and his mother.
PROFESSOR HOLDAWAY’S
RECOMMENDATIONS
20. A number of recommendations have been
made by Professor Holdaway. They are:
In cases
involving children with disabilities requiring long term
interventions by multiple agencies a case manager should be
appointed at an early stage. The case manager should be a
recipient of all written communications between agencies and
a participant in all case conferences. This role should be
appropriately funded.
As part of the Needs
Assessment process, agencies should be encouraged to
communicate fully with the other organisations involved in
the child’s care. Budgetary planning should allow this to
occur.
The Radical Respite Unit at the Wilson
Home is fulfilling an important role but with only three
beds it is not nearly big enough to meet the needs of
children in the Auckland area. Consideration should be
given to extending the Unit.
Consideration
should be given to establishing further residential places
for younger children with special needs in the Auckland area
for whom family resources are insufficient.
Consideration should be given to providing parents with
copies of letters to their GPs, particularly in the case of
children with complex clinical problems, so that the parents
can be fully informed and participate in care.
MINISTRY OF
HEALTH COMMENT
18. Ben’s tragic death has been determined
by the Coroner to be due to his epilepsy, which was very
difficult to control.
19. Ben’s situation was highly
complex. While the health services to Ben were of a high
standard there have clearly been problems in a number of
areas. The Ministry is particularly concerned
that:
no single agency or individual was
responsible for co-ordinating all of Ben’s care. Given the
number of different agencies involved, co-ordination should
have been an essential aspect of his care
although relationships between the health and social service
professionals and Mrs Hyde-Hills were strained and many
attempts were made to address this, at no stage was any
effective mechanism put in place to achieve a satisfactory
resolution to these difficulties
health
professionals were not clear about the role of the
Department of Children, Youth and Family Services. The
Family Group Conferences which were convened by the
Department did not appear to contribute positively to the
health and educational sectors’ ability to resolve the
problems
although concerns about Mrs Hyde-Hills’
ability to cope with the stresses of Ben’s condition were
frequently raised by all groups involved, no effective
support services for Mrs Hyde-Hills were
implemented
the provision of respite care for
children such as Ben is inadequate in the greater Auckland
area. This is likely to be reflected throughout New
Zealand, and is a significant issue for many families with
children who have disabilities and challenging
behaviour.
20. Overall, the Ministry concurs with
Professor Holdaway’s report and recommendations.
TERMS OF
REFERENCE FOR PROFESSOR HOLDAWAY'S REVIEW
The review to
include:
How and when diagnoses were made of
Ben's condition.
The adequacy of assessment
which were carried out to ascertain Ben's and his family's
support needs.
The availability of health and
disability services to meet those needs as
assessed.
The services that Ben and his family
received and the quality of those services, having regard to
current professional and ethical practice.
The
continuity of services provided and the level of
co-operation amongst health providers and others to ensure
quality and continuity of services.
The adequacy
of consultation with Ben's family regarding the most
appropriate care and treatment of
Ben.