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.

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