The Provision of Children’s Cancer Services in New Zealand ...file/Provision_childrens_cancer_services_NZ.pdf · •the establishment of a paediatric oncology nursing education

The Provision of Children’s Cancer Services in New Zealand

A Report for the Health Funding Authority

August 1999

Prepared by:

Dr Michael StevensMedical Director and Consultant Paediatric OncologistBirmingham Children’s Hospital NHS TrustBirmingham B4 6NHUnited Kingdom

&ChairmanUnited Kingdom Children’s Cancer Study Group


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Contents

1. Introduction

• Terms of Reference

• The National Child Health Strategy and ‘Through the Eyes of a Child’: a

National Review of Paediatric Speciality Services.

• Background to existing service configuration

2. Assessments of Tertiary Centres

• Auckland

• Wellington

• Christchurch

• Dunedin

3. Examples of Shared Care

• Nelson

• Invercargill

4. Perspectives of each major constituency group

• Medical

• Nursing

• Other staff

• Parents and the Child Cancer Foundation

5. Economic analysis

6. Recommendations

7. Appendices

• National Service Specification – Suggested Standards of Staffing and

Resource for Tertiary Centres.

• Suggested Guidelines for the Designation and Accreditation of Shared

Care Units

8. Acknowledgements

9. References


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1. Introduction

Terms of Reference

To review the provision of services for children with cancer in New Zealand and to

make a recommendation based on optimal configuration.

Consideration should be given to -

• viability of a service in the context of professional skills

• accessibility

• affordability

• effective use of regional hospital and primary care links

• psychosocial support for families including transport and accommodation

The National Child Health Strategy and ‘Through the Eyes of a Child’: a

National Review of Paediatric Speciality Services

The Ministry of Health published its Child Health Strategy in 1998. This set out the

commitment of the New Zealand Government, with the Health Funding Authority and

providers, to work together to improve, promote and protect the health of children /

tamariki and their families and whanau. The Strategy’s principles apply to all levels of

service for children and although directly applicable to all children up to the age of 15

years, there is also a recognition that the needs of young people aged 15 to 18 years

may be best met through paediatric services: this is particularly applicable to specialist

services including those for young people with cancer. The Strategy referred to the

National Review of Paediatric Speciality Services - a joint project between the HFA

and the Paediatric Society of New Zealand, with Ministry of Health participation. The

report resulting from this review,“Through the Eyes of a Child”, was presented in

1998 and defined key principles for all services, including specific recommendations

in individual speciality areas.

It is recognised that the conclusions of this special review of Children’s Cancer

Services will need to align with the principles defined in these two important policy

documents. Key points from the specialist services review encompass the following

principles :


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Services must

• be child and family focused

• be provided as close to home as possible within the bounds of quality and safety

• achieve equity of outcome

• reflect international best practice, research and education

• be monitored and evaluated regularly

• be integrated with other child health services

• be culturally sensitive

• be fiscally responsible

The recommendations which derive from these principles include some very

important statements of priority in relation to the provision of cancer services, namely:

• the establishment of a single nation-wide children’s cancer service, with national

registration and shared guidelines for diagnosis, treatment and support.

• the importance of shared care and outreach services (including accommodation

and travel support for families)

• the development of a national tumour board to allow oncologists to pool expertise

in managing problematic cases

• the establishment of a paediatric oncology nursing education course.

These shared goals form part of the platform onto which a decision about service

configuration can be built.

Background to existing service configuration

Specialist care for children with cancer in New Zealand has, in most centres, only

relatively recently evolved from services provided by general paediatricians. Specialist

paediatric oncologists have been appointed in Christchurch, Wellington and Dunedin

within the past 5 years although the service in Auckland is of longer standing and now

also incorporates the service originally provided in Hamilton. On the basis that the

presence of a specialist paediatric oncologist has broadly defined the provision of

tertiary level care, services are currently offered on four sites across the country -

Auckland, Wellington, Christchurch and Dunedin. Referral rates reflect the population

distribution within historical geographical catchment areas. Approximate numbers of

new patients seen per year in each centre are as follows:

Auckland 70 - 80


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Wellington 20 - 25

Christchurch 20 - 25

Dunedin 10 - 12

These figures reasonably reflect the expected incidence (140 / million children / year)

within a population of approximately 3.6 million (~ 850,000 children aged < 15

years). International comparison on the basis of patient numbers alone would suggest

that a single specialist children’s cancer centre could adequately provide services for

the national population. However, this comparison is simplistic when the

configuration of population distribution and the geographical obstacles to rapid travel

in some parts of the country are considered. It is clear that any recommendation to

reconfigure children’s cancer services should derive not only from a conclusion that

the existing arrangements are inappropriate or inadequate, or both, but that any

proposed solution meets, as far as possible, the particular characteristics of the New

Zealand situation, i.e. the simple translation of an internationally accepted solution

based on centre size (new patients per year) is unlikely to be sensible or acceptable. It

is of fundamental importance that any decisions taken as a consequence of this review

should not merely aim to address real or perceived difficulties with existing service

provision but should also ensure that the optimal platform is created for future service

delivery and development.

It is disappointing that there is no reliable and up to date data about childhood cancer

survival in New Zealand but it is clear from international data that treatment centre

size (defined in terms of new patients seen each year) is not the single determining

factor affecting patient survival. However, centre size cannot be ignored as it is may

have a significant impact on staff recruitment and retention and may critically affect

the skills necessary to implement certain elements of cancer care including, for

example, bone marrow transplantation, radiotherapy and specialised surgery.

Economies of scale may be achieved by concentrating resources in fewer centres

although this could be offset by the additional travel and accommodation costs

required to support families. Furthermore, significant savings cannot always be

achieved by concentrating patient care in fewer centres particularly in relation to

certain fixed costs, such as drug expenditure.


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The existence of four centres providing tertiary level care for children with cancer is a

recognised source of concern. The report of the Paediatric Oncology Review

Committee to the National Review of Children’s Services concluded that

“…(paediatric oncology) services in New Zealand were fragmented and required

reorganisation”. Consensus was reached by the committee on a number of points,

namely:

• the establishment of a single nation-wide Child Cancer Service

• whenever possible patients should be treated on nationally agreed clinical trials

co-ordinated by co-operative children’s cancer groups

• arrangements for families who were required to travel for treatment should be

adequately supported particularly in terms of travel and accommodation

• steps be taken to improve educational opportunities for staff working in the

speciality.

Consensus could not however be reached on the critical issue of the optimal

configuration for service delivery. This external review therefore must consider all

options from the status quo (four tertiary centres) to the development of a single centre

model. It is important to note that the National Review Committee report also

addressed the needs of young people aged 15 - 19 years with cancer for whom no

specific provision is made within existing strategies and whose needs should be

considered within the context of a solution to the delivery of paediatric oncology

services.

The philosophy of outreach or shared care by which components of care are devolved

by the tertiary centre to other more local health care providers (usually secondary level

paediatric facilities in regional hospitals but occasionally to general practitioners and

primary care nursing teams) is well recognised internationally and is implemented to a

greater or lesser extent by all centres in New Zealand. Shared care demands excellence

in communication and the creation of absolute confidence in the shared care centre for

the patient and family from the time of diagnosis. This is the responsibility of the

tertiary centre and must be supported by a negotiated agreement between the two

teams about the level of care necessary and expected for any individual patient.

Geographical considerations make optimal use of shared care an essential component

of care for some children with cancer in New Zealand and no reconfiguration of the


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tertiary centres is acceptable without due consideration of its impact on existing

shared care relationships.

In undertaking this review, a programme of visits was arranged to include each of the

four tertiary children’s cancer centres (Auckland, Wellington, Christchurch and

Dunedin) and two established shared care centres (Nelson and Invercargill). Each

tertiary centre was asked to provide a programme to involve in the discussions as wide

a range of staff as they felt appropriate and also to ensure that opportunities were

created to meet with the local representatives of the Child Cancer Foundation (CCF).

In addition a meeting was held in Auckland with members of the National Executive

of CCF and of CanTeen, the teenage cancer support group. Clinicians in each centre

were also invited to prepare brief written descriptions of their service to assist in the

review process.

2. Assessments of Tertiary Centres

Auckland

Auckland was the only tertiary centre which failed to provide a service profile to

support the review process. The programme of meetings was also less comprehensive

than at other centres and fewer staff were engaged in the discussions. The status of the

Starship Children’s Health as the premier specialist children’s facility in the country is

well understood both inside and outside the institution. This may perhaps result in an

over simplistic assessment of the best solution to the service configuration problem:

the medical staff and management of Starship clearly view the only sensible outcome

to be their future as the single provider of tertiary paediatric oncology care, albeit with

effective shared care links. This position limits their view of the chance for successful

implementation of other configurations within the concept of a single national service.

Furthermore there is some concern from professionals outside Auckland that if a

single centre model is not recommended, the paediatric oncology service at Starship

may not wish to collaborate within New Zealand, preferring instead to affiliate itself

to one of the international collaborative children’s cancer study groups. This would be

detrimental to the concept of a single national service. Auckland’s lack of

participation in the monthly teleconferenced tumour boards held between the other


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three centres is seen as evidence of this and has been interpreted by others as a

reluctance to share expertise.

The meetings with the Starship team exposed their sense of frustration with a

consultation process which had failed to resolve an issue to which they feel the

solution is self evident. The presence of paediatric subspecialty support within

Starship is a considerable strength. For example, in relation to Intensive Care,

although the national agreement about retrieval from other centres appears to work

well (in both directions) it is likely that the proximity of intensivist advice and support

offers an advantage to the Auckland team in managing very sick patients. However

some concerns were expressed outside Auckland about the functional health of some

departments including, importantly, paediatric surgery. Paediatric neurosurgery does

not currently reside within Starship although the continuing management of paediatric

patients within the neighbouring adult facility is seen as unacceptable and there is a

desire to remedy the situation by transferring the service as soon as possible.

Unfortunately it was not possible to meet any of the general paediatric surgery staff or

the neurosurgeons, nor was it possible to form clear views about the strength of the

links with the adult oncologists in the absence of a discussion with the radiotherapists.

However, no concerns were expressed by the medical or nursing staff from Starship in

relation to the management of children requiring surgery or radiotherapy.

Shared care structures seem well developed between Starship and referring centres at

regional hospitals. The paediatric oncologists provide outreach clinics and designated

link nurses in the shared care centres communicate with a shared care nursing co-

ordinator based at Starship. The medical staff have a clear view of the importance of

shared care and would welcome a frame work through which shared care centres are

accredited to provide specific levels of care. The additional burden of travel to

Auckland by more families if the service were to become the national centre was

acknowledged by all staff, although it was generally felt that families would accept the

disruption involved if the transport and accommodation resources were adequate. The

importance of good communication was emphasised and there is an initiative by Dr

David Mauger to develop an electronic patient record system accessible both within

and outside the institution. This would presumably replace the existing patient held


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record and although a sensible and welcome initiative, it is ambitious in its scope and

should not be seen as a limiting factor in extending the shared care structure which

already exists. Further development should probably be set in the context of any

national child health IT initiatives.

One of the most important issues for Auckland is the need to assess the likely impact

on their existing facilities if patients were to be transferred in from the other tertiary

centres. This has particular relevance within plans for other service transfers to the

Auckland Hospital site. Strong managerial assurance was offered that the necessary

facilities would be provided and it is recognised that the existing in patient and

outpatient facilities are inadequate to support increased patient referral rates. Until a

decision has been reached about national configuration it is unlikely that detailed work

can be undertaken to obtain a clear idea of what would be involved and how much the

cost (revenue and capital) would be.

The current and future role of Auckland as the natural leader of a national children’s

cancer service merits discussion. By virtue of its patient population and its location

within New Zealand’s only tertiary paediatric institution it occupies a position of

seniority and could also perhaps become the sole supplier of certain specialised

services (e.g. Bone marrow transplantation) within the country even if it does not

become the single paediatric oncology unit. The paediatric oncologists are however

already under pressure from their existing clinical duties, particularly since Dr Scott

Macfarlane took on medical management responsibilities, and the institution is

experiencing difficulty in recruiting an additional staff member. There was no sense

that the existing staffing could absorb work from other centres and it cannot be certain

that the staff in the centres outside Auckland would wish to transfer if the clinical

service were to be reconfigured. Senior medical staffing could then become a critical

issue and a robust international recruitment policy may be required. Existing academic

strengths and opportunities might become a major factor in this. There is little current

evidence of clinical research within the department, other than a contribution to some

clinical trials, and the extent to which the department commits itself to collaborate in

basic science research (molecular genetics etc.) with colleagues in Auckland or

elsewhere is unclear. As the nature of paediatric oncology is to be at the interface


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between clinical practice and research there is a need for the paediatric oncology

department at Starship to review its academic position and plans. Notwithstanding the

outcome of this review of service configuration, Auckland’s ability to attract staff of

the highest calibre to provide the leadership necessary for paediatric oncology, both

locally and nationally, may depend on its academic and research potential.

Wellington

The commitment and enthusiasm of the Wellington clinical team were apparent.

Hospital management and the university department expressed considerable support

for the paediatric oncology service and discussions with all staff were conducted in a

spirit of openness and honesty. There is a strong local belief in the quality of the

service currently being delivered.

The difficulties experienced by the Wellington service in recent years, including a

short term need to suspend the service for new patients, relate to problems with senior

medical staffing and highlight precisely the dangers of single specialist practice. The

lessons learned from this experience were clearly understood at all levels of the

organisation although a solution has not yet been satisfactorily implemented: this is a

priority if the service is to be sustained. The need to avoid a situation in which a

service is supported by a single handed consultant is clearly recognised in the National

Review of Paediatric Speciality Services report.

It was clear that the oncology service is a major component of the paediatric services

in Wellington, particularly of in patient care on the wards and that the skills of the

nursing staff are strongly focused towards the needs of the oncology children and their

families. This did not appear to cause difficulty or resentment by other members of the

paediatric team and there was a sense of pride in the delivery of this sub speciality

service within the Department of Paediatrics. Nevertheless there was a reluctance

amongst the general paediatricians to support the service in the absence of a paediatric

oncologist (this may derive from the difficulties encountered during the absence of Dr

Margaret Lewis and prior to the appointment of Dr Wayne Nicholls) and there is a

desire to see adequate senior specialist medical staff support in place without delay.

This view highlights the point that general paediatricians within the existing tertiary


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centres may actually have less expertise in the management of paediatric oncology

patients than colleagues in regional hospitals who have a history of working within

shared care relationships. There must therefore be a recognition that if paediatric

oncology in Wellington were to be downscaled to a role as a secondary care provider,

recruitment of a general paediatrician with an interest in shared care oncology to

replace an on site paediatric oncology specialist could also present a challenge to the

department.

Nursing developments have included the appointment of a nurse educator, a full time

ambulatory care nurse and two part time domiciliary nurses. This latter development

was particularly welcomed by the parents representatives and the philosophy of the

unit appears genuinely to be focused on limiting in patient stay and maximising care at

home. It was unclear how much the domiciliary nurses have developed their role in

facilitating community care by local paediatric or primary care teams but there seemed

to be a recognition of the need for this and for transferring skills rather than retaining

control of all aspects of patient care. Shared care links appear to be limited and most

of the treatment is delivered centrally but data provided by the Child Cancer

Foundation, Central Division, suggest that over 80% of the patients treated at

Wellington come from within 3 hours drive of the city and 50% within the greater

Wellington area itself. This is a distinction from the patient referral patterns at other

centres and supports a view that the removal of tertiary services from Wellington

would require the majority of patients to travel further than they are required to do at

present. Referral patterns in the North Island have also evolved in such a way that

patients from some areas currently travelling to Auckland are actually closer to

Wellington (e.g. from Napier Hastings area).

There did not appear to be any formal structure for nursing staff to share their skills

and experience with the other paediatric oncology units in the country although a

certain amount of informal contact appeared to exist. A shared care study day was

organised by the Wellington team in 1998 and was well received.

The strength of support services in Wellington varies. Concern was expressed about

the lack of responsiveness of laboratory services to paediatric needs and to the limited


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availability of paediatric radiology resource. The clinicians and managers were open

to the use of new technologies (teleconferencing and outsourcing of pathology

services) if required to support histopathology and radiology skills although it was not

clear that these were being employed at present or whether the necessary relationships

had been created with specialists elsewhere to allow this to happen. The department

had felt rebuffed by the Auckland unit’s reluctance to engage in a monthly tumour

board but valued the links established to create a collaboration with Christchurch and

Dunedin. Hitherto, links between the Wellington unit and the other paediatric

oncology services in New Zealand appear to have been relatively limited - an isolation

made more apparent by the lack of a cohesive national structure within the speciality.

Support from paediatric surgery and neurosurgery was strongly expressed and both the

paediatric surgeons and the neurosurgeons see their role in oncology as a very

important responsibility in their own professional lives. Similarly there was a

considerable personal commitment from the radiation therapists and from one of the

consultant radiotherapists. Efforts have been made to support children through

radiotherapy without, as far as possible, the use of anaesthesia including play

techniques although the absence of a specialist play therapist was acknowledged as a

need to be addressed.

In view of the small size of the paediatric oncology referral rate to Wellington,

clinicians in a number of the associated specialities including both radiotherapy and

neurosurgery are vulnerable to skill loss from the very small numbers of paediatric

patients treated within the unit. If the service is to be retained they would need to be

able to demonstrate that they were able to adequately ensure standards of service

development in line with emerging clinical practice. The same concern could be raised

in relation to aspects of general paediatric surgery, particularly for major procedures.

When discussed, this concern was defended on the basis of the qualities and

commitment of the individuals in post. Although understandable, over reliance on

individual commitment is always a weakness in the longer term and smaller units can

never confidently sustain services on the basis of the personal qualities of key

individuals. There was however no evidence to doubt the clinical abilities of those

currently involved with these aspects of care, but the centre in Wellington, if it were to


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survive in its current form, would need to ensure that all the specialists involved in the

paediatric oncology service participated in appropriate external audit and continuing

professional development – the creation of a single national child cancer service

would be the focus for this.

Bone marrow transplantation for children is not undertaken in Wellington and patients

are referred to Auckland if this is required.

A specific need for more social work resource was recognised both by the

multidisciplinary team and by the Child Cancer Foundation.

The major threat to the service in Wellington must be in the ability to adequately

sustain a tertiary service with a single paediatric oncologist. This imposes

unreasonable expectations on one individual and creates anxiety for other staff and

parents when the oncologist is away from the hospital. It also limits the time available

to develop shared care services particularly through the provision of outreach clinics.

The size of the patient population would not normally justify the appointment of a

second full time specialist paediatric oncologist although the extension of the service

to include responsibility for young people from aged 15 - 19 years would supplement

this. The solution could lie in the appointment either of a general paediatrician with a

major part time commitment to paediatric oncology or to the appointment of a

university post with an academic role to complement a half time clinical commitment

to the speciality. A post with general paediatric duties is unlikely to attract individuals

with comprehensive paediatric oncology training and the latter (university

appointment) solution appears at present to depend on the outcome of Dr Margaret

Lewis’ current absence from the university department. It was not clear how easily or

rapidly this situation could be resolved and the ability to ensure early progress in

addressing the paediatric oncology staffing issues may require the identification of a

new funding stream to allow recruitment to proceed without further delay. It seems

likely, however, that the historical uncertainties surrounding the service will make it

more difficult to attract quality applicants. This is the critical factor determining the

future of Wellington as a tertiary paediatric oncology centre.


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Christchurch

Of all the centres visited, the team in Christchurch offered the most comprehensive

programme for the review. In addition to discussions with the paediatric oncology

team and within the paediatric department, meetings were organised with senior staff

in paediatric surgery and neurosurgery, paediatric anaesthesia, ophthalmology,

radiotherapy, (adult) medical oncology and haematology - these latter discussions

reflecting the way in which paediatric oncology had previously been sustained by a

general paediatrician (Dr George Abbott) through successful links with appropriate

adult services. Notwithstanding recent adverse publicity, the clinicians supporting the

service had a positive view of the hospital management and there appeared to be a

vision for the further development of specialist services in Christchurch which was

shared by clinicians and managers. Locally, the majority of senior staff did not appear

to believe it appropriate that paediatric speciality services should be developed to the

same level of diversity as exist in Auckland and preferred to build on existing

strengths in selected areas. For example, paediatric surgery and paediatric anaesthesia

were particularly strong and clinicians in both these services believed that not only

were they able to provide an important component of care to children with cancer but

that if tertiary paediatric oncology services were withdrawn, this would cause

significant damage to their own clinical practice. The absence of designated paediatric

intensive care facilities in Christchurch was not felt to be a major detriment to the

oncology service; the retrieval service from Auckland appeared to work well and the

communication which resulted from the discussion of patient transfers was thought to

have enhanced rather than diminished local skills and the more recent introduction of

a local paediatric high dependency area offered intermediate care.

Three aspects of the service in Christchurch merit particular discussion – the emerging

level of collaboration / centralisation of services with Dunedin; the strength of the

relationship between adult and paediatric oncology; and the special provision of

paediatric bone marrow transplantation and care for children with retinoblastoma.

The paediatric oncologists in Christchurch (Dr Robin Corbett) and Dunedin (Dr

Michael Sullivan) have already expressed their view that the two units should merge –

a view unanimously supported by the paediatric oncology review committee for the


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National Review of Paediatric Services. The motives for this have been interpreted

unfavourably in some quarters, notably amongst families from Otago and Southland,

but the steps taken so far include active collaboration on a professional level to review

clinical problems (including the telemedicine tumour board link up with Dr Nichols in

Wellington) and the referral of all patients requiring bone marrow transplantation

from Dunedin to Christchurch. This trend should be seen in the context of the changes

to the delivery of other paediatric services in the South Island – the paediatric

surgeons (supported by the paediatric anaesthetists) have developed a well respected

outreach service which enables less complex surgery to be undertaken locally whilst

more challenging cases are cared for in Christchurch. The neurosurgeons have also

agreed plans to transfer paediatric neurosurgery from Dunedin to Christchurch.

Notwithstanding this centralisation to Christchurch, there was also a recognition that

some surgery requires further specialisation and the designation of national centres

for, for example, bone tumour surgery and liver tumour surgery on a national basis

were supported by the Christchurch clinicians.

The provision of paediatric oncology in Canterbury was, until the appointment of Dr

Corbett, supported by a general paediatrician ‘with an interest’ (Dr George Abbot) and

by the adult oncologists and haematologists some of whom have previous training and

a continuing interest in the care of children with malignant disease. This offered a

strength to the service and support has been provided by these adult specialists in a

sensitive manner and without eroding any understanding of the special needs of

children. The resources (senior medical staff and machines) for radiotherapy are

greater in Christchurch than in either Wellington or Dunedin and there may already be

some early evidence that radiotherapy for patients in Dunedin is being transferred to

Christchurch.

The provision of bone marrow transplantation for children in Christchurch makes this,

with Auckland, one of the only two centres undertaking such work nationally. A case

could be made that the special needs of children requiring bone marrow

transplantation should be provided from a single centre and that, on the basis of the

patient numbers, this would be in Auckland. However, the number of paediatric

patients transplanted in the single paediatric centre would be less than the total


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number of patients (adult and paediatric) managed by the Christchurch unit. It is

likely that there would also be a need for Starship to increase its staffing to meet the

additional demand on this subspecialty aspect of its paediatric oncology service which

is currently the responsibility of a single member of staff (Dr Lochie Teague).

Although the paediatric component is perhaps only 10 – 15% of the total transplant

activity, the size of the total programme in Christchurch is sufficient to maintain a

designated and well designed unit with a stable core of experienced staff. There are

good international examples of transplant programmes which successfully integrate

the needs of children and adults but the key issue is always to provide care for

children in an appropriate environment using appropriately trained nursing staff. This

did not always seem to be achieved by the Christchurch unit and there was some local

difference of opinion about the need to physically relocate the paediatric transplant

facilities to within the paediatric in patient unit whilst retaining the input and expertise

of the adult haematologists and the BMT unit nursing staff. The planned

reconfiguration of facilities for paediatrics at Christchurch Hospital offers an

opportunity to achieve this and yet to retain close geographical and organisational

links with the adult service.

There was a particularly strong case to be made for designating Christchurch as the

only national treatment centre for children with retinoblastoma. This was based on

established patterns of referral (although some patients are treated in Auckland) and

on the availability of expertise in the departments of ophthalmology, genetics and

radiotherapy. Christchurch is the only centre in the country able to apply plaque

radiation and it has an established reputation for adult ocular oncology. Although this

involves only a very small number of patients, given the increased place for

chemotherapy in the care of children with retinoblastoma, this is a small but important

additional reason to maintain local paediatric oncology expertise.

The final element for discussion in relation to the future of a tertiary service in

Christchurch lies with the scope of the plans to relocate women’s and neonatal

services to the Christchurch Hospital site. This will involve a redevelopment of the

paediatric facilities and there was great concern, expressed particularly by the nursing

staff, that insufficient resource will be made available to address the needs of the


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paediatric oncology service whose facilities are already uncomfortably cramped and

insufficiently protected from the risks of cross infection (a risk inherent for services

which share facilities with general paediatric patients). The willingness of the hospital

management to confront and resolve this challenge will be paramount.

Dunedin

Dunedin is a city with a long and distinguished reputation in medical education and

clinical academic practice but it has a small population base and this has clearly made

an impact on its ability to sustain its position in the provision of specialist care.

Nevertheless a paediatric oncology service has existed for the Otago Southland

population for almost 20 years. Developed and run by Professor David Holdaway, a

service was offered with the support of local adult haematology oncology services and

with the advice of overseas colleagues. Since Professor Holdaway’s retirement, the

service has been led by Dr Sullivan as a single specialist. The service is small in terms

of patient numbers but there is a committed and comprehensive multidisciplinary team

and an excellent relationship with the outreach service provided at Invercargill by Dr

Ian Shaw. The considerable strengths of the nursing team were evident and there was

a major commitment to minimising in patient stay and providing care at home

whenever possible. The personalised nature of the service provided by the Dunedin

team was highly regarded by both families and professionals.

The senior management in Dunedin expressed some surprise at the timing of this

review and believe it pre-empts the outcome of a working party established by Otago

Health to explore the implications of the proposals presented by the paediatric

oncologists to merge the service with Christchurch. There was understandable anxiety

about any decision which might represent further erosion of the local clinical base and

there was a perception that the decision of the paediatric oncologists in Christchurch

and Dunedin to collaborate with a view to a merger on the Christchurch site was, at

least in part, an expression of self interest. It was not apparent, however, that there is

complete understanding at managerial level of the problems which derive from a

service being supported by a single specialist. It is also important to acknowledge that

the need to withdraw the tertiary status of the Dunedin unit was the only decision

about service configuration to be unanimously supported by the National Review


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Committee. It is also clear that paediatric oncology would not be completely lost from

Dunedin if this merger is allowed to proceed as the continuing provision of secondary

care would be required on a shared care basis with the tertiary centre in Christchurch.

The existing levels of expertise amongst nursing staff and other members of the

multidisciplinary team would almost certainly allow this to be undertaken at a higher

level of complexity than may be possible at other regional shared care links.

The professional view of the paediatric oncologists must also be seen in the context of

other service changes. For example, low patient throughput and insufficient senior

medical staff had already resulted in loss of neurosurgical accreditation and there are

now plans for the development of a comprehensive neurosurgical centre for the South

Island based ultimately in Christchurch but initially on both sites with outreach

support to Dunedin (and elsewhere) from Christchurch. This had already led to the

recommendation that children with brain and spinal tumours from Otago and

Southland should be transferred to Christchurch (Neurosurgery Report for the

National Review of Paediatric Speciality Services). Similarly, the configuration of

paediatric surgical services in the South Island has evolved around a Christchurch

‘hub’ with support to Dunedin as part of a wider network of outreach services. These

trends clearly parallel the awareness felt by the paediatric oncologists in both centres

that whilst their individual clinical practices are too small for sustained service

development, if combined they would offer a critical mass sufficient to sustain a

viable service.

There was already evidence of increasing collaboration between the Christchurch and

Dunedin units over the past two years. A common approach had been developed

towards treatment and supportive care policies and there are monthly meetings

between the oncologists for case review, peer support and continuing medical

education (linking also with Wellington in the telemedicine tumour board). So far

these links appeared to exist only at senior medical staff level and there was

considerable, and understandable, concern from other staff in Dunedin at the threat to

the status of the existing tertiary service. This was echoed by the families who receive

treatment in Dunedin and the importance of maintaining the status quo was forcefully


19

presented in discussion with the local Child Cancer Foundation representatives,

including meetings with parents in both Dunedin and Invercargill.

Discussions with medical staff in other aspects of paediatrics and in the relevant adult

services (haematology and radiotherapy) highlighted similar concerns about erosion of

service base and raised a further concern about the impact of a reduction in paediatric

oncology experience on the training of paediatric junior medical staff.

The existing links between Dr Sullivan and Professor Tony Reeve highlight the

strength of Dunedin’s biological science programme although no convincing

arguments were made to counter the proposal that this type of scientific collaboration

can be maintained at a distance if there is a commitment by those concerned to do so

and if appropriate arrangements are made for the collection and transport of biological

samples. Indeed, it was disappointing to note that there was almost no collaboration

with the molecular genetic research programme in Dunedin by the clinicians from the

other treatment centres in New Zealand: this is represents a real loss of opportunity at

an international level and could be addressed if the specifications for a single national

paediatric oncology service were to include the need to collaborate more widely in

both clinical and laboratory research.

Finally, as in Wellington, there must be a recognition that if paediatric oncology in

Dunedin were to be downscaled to a role as a secondary care provider, designation of

a general paediatrician with an interest in shared care oncology would be required to

replace an on site paediatric oncology specialist.

3. Examples of shared care practice

Nelson

This regional hospital has a long tradition of shared care support for paediatric

oncology and now links predominantly, but not exclusively, with Christchurch. There

is an acceptance that patients must be transferred out at the time of diagnosis and that

the choice of centre, from the professional point of view, is largely immaterial


20

although the preference is largely determined by the personal relationships established

between the paediatric oncologist and the referring paediatrician. Parents vary in their

enthusiasm for shared care and some express strong preference for maximal local care

whilst others require greater security by contact with the centre. It was clear that the

attitude of all staff in the tertiary centre can have a significant impact on the

confidence of parents in shared care arrangements and if it is to work to maximum

advantage a positive approach needs to be taken by all the staff of the paediatric

oncology centre towards the regional hospital’s ability to care adequately for their

child. Fundamentally it was felt that the transport and support arrangements for

families will predicate the preference and optimal configuration of tertiary service

delivery. Some families from Nelson opt to be referred to Auckland or Wellington

rather than Christchurch because they have local family support available in those

cities. Links with Wellington have however never been well established for paediatric

oncology. This may partly reflect the previous difficulties with service delivery in

Wellington but this route is not generally favoured because of the need to cross the

Cook Straight and because most families prefer to be able to drive to their tertiary

centre if necessary. This allows greater flexibility particularly in allowing visits by

members of the family other than the principal carer who accompanies the child to

hospital.

The physical state of the paediatric department in Nelson would merit investment and

there appeared to be local concerns about the adequacy of the accommodation being

offered to paediatrics as part of the redevelopment of the Nelson hospital facilities.

Notwithstanding this the special needs of children receiving chemotherapy were

acknowledged and separate inpatient and day case treatment facilities were available.

In patient and outpatient chemotherapy could be provided and knowledge about its

safe administration was available. A single paediatrician (Dr Richard MacKay) and

outreach nurse (Linda Stockley) are responsible for all oncology patients, regardless of

their tertiary centre: an arrangement which provides good continuity of care.

Arrangements were in place for alternative cover by other local staff in their absence.

Good communication exists with both medical and nursing staff in Christchurch and

there is particular recognition of the high standard and promptness of written


21

communication received when children are transferred back after initial diagnosis.

Specialised blood products are available from Wellington and, with careful planning

of expected needs, this does not appear to be a cause of difficulty. Paediatric surgical

outreach services are provided from Christchurch but no formal arrangements exist by

which either medical or nursing staff from the Christchurch paediatric oncology unit

visit Nelson, nor does the Christchurch team provide any formal opportunity for

educational update, for example by an annual shared care study day.

The professionals in Nelson echoed the concerns expressed at all the meetings with

the Child Cancer Foundation about the inadequacy of existing transport and

accommodation support for families.

Invercargill

There is a strong and long standing shared care relationship between Dunedin and

Southland Hospital in Invercargill. Unfortunately Dr Ian Shaw was away on the day of

the visit to Invercargill and neither of the two other paediatricians were available but a

very helpful discussion was held with the Paediatric Oncology Nurse (Robyn Kelly)

and with hospital management, including the CEO of Southland Hospital. The

paediatric facilities are good and there was obvious commitment to support the

existing service, with, where relevant, additional support from general practitioners in

more isolated areas. In fact there was a sense that more complex care could be

devolved to the Invercargill team and it was surprising to note that little or no

inpatient chemotherapy was undertaken at Southland Hospital (in contrast, for

example, with Nelson). Access to support from the Dunedin team was felt to be good

at both medical and nursing levels and shared care clinics had recently been increased

from quarterly to bi monthly. The use of patient held records was well developed and

clearly essential.

The hospital management emphasised its full support for whatever level of shared

care was felt professionally appropriate, providing that the resources were made

available and that they would work within the framework of whatever service

configuration was finally agreed. The major concerns expressed at the meeting were

those subsequently echoed at a meeting with parents – namely anxieties about the


22

extra distance it would be necessary for families to travel if care was centralised at

Christchurch and an additional concern that this could be a factor in prolonging

hospital admission and family separation. The strengthening of shared care

relationships should be able to prevent such a trend and whatever the final

configuration there are real issues to be addressed in relation to the existing support

offered to families, particularly in terms of travel and accommodation.

4. Perspectives of each major constituency group

Medical Staff

The paediatric oncologists have failed to achieve a consensus view about the optimal

configuration for service delivery but in their report to the National Review of

Paediatric Speciality Services there was clear recognition that the existing service is

fragmented and sub-optimal. They recommended the establishment of a single

national service with specified standards and defined the key linkages necessary with

other clinical specialities. None of the single handed specialists accept that they

should remain professionally unsupported and none see the development of modern

communications such as telemedicine and email as an adequate substitute for a

colleague working alongside them within their centre. The medical staff in each of the

three centres outside Auckland value their paediatric oncology service and in each

there was strong support for its retention from colleagues in related disciplines – some

even expressing uncertainty about their own future should paediatric oncology lose its

tertiary status in their centre. There was evidence of considerable understanding of the

problems experienced by families in travelling large distances to the treatment centres.

Staff in all units acknowledged the need for improved travel and accommodation

arrangements and the importance of devolving care closer to home through robust

shared care arrangements (although in all cases it seemed likely that these could be

further developed). There was, overall, strong resistance from medical staff outside

Auckland to the designation of a single national centre and it was argued, with some

justification, that the creation of a ‘monopoly’ provider might diminish the incentive

to future service development on a national basis. There was acceptance that the

maintenance of centres which, in international terms, have relatively small patient

populations could be justified on the basis of geographical configuration. It was not


23

believed however that all three centres outside Auckland would be viable in terms of

available staff and resources if resourced adequately

Nursing Staff

The nursing staff in all units were highly committed and often very experienced.

Although less partisan than their medical colleagues, nurses understandably saw the

strengths of their own unit and wished for its survival as a tertiary centre. It was

disappointing that there were fewer examples of inter unit collaboration in terms of

sharing of professional skills and educational initiatives – indeed, in the South Island

relationships with Australian units, although informal, seemed more valued than

national collaboration. This may reflect the relative lack of educational opportunity for

professional development within paediatric nursing in general in New Zealand and all

staff recognised the need to address this in the future. Furthermore there was little

evidence of formal arrangements to support the roles of the paediatric specialist nurses

working in regional hospitals. Although relationships were established on an

individual level over the care of specific patients and seemed of a high standard, there

was an obvious place for better support through, for example, shared care study days

and short term secondments to the tertiary centre. Nursing staff were concerned about

losing skills and retaining staff in centres which may lose their tertiary role but they

were equally aware of the needs of families and the importance of working in

whatever way optimises care for them and their children.

Other Staff

Each existing unit had developed a multidisciplinary team. Strengths and resources

vary but the majority of components exist in each centre to address the psychosocial

and supportive care needs of the patients and families. Some centres offered particular

strengths, for example the dental service provided in Dunedin, and in others particular

investment was requested, for example the need for additional social work resource in

Wellington. All staff reinforced the view of the family and expressions of concern

were made in all centres about the inequity and general insufficiency of existing social

support arrangements. The ethnic and cultural mix of the population varies between

different centres which in turn creates differing needs for support to Maori or Pacific

families.


24

Parents and the Child Cancer Foundation

A meeting was held in Auckland with the Chairman and Executive Director of the

Child Cancer Foundation, and with a representative of CanTeen (support for teenagers

with cancer). This was followed by meetings with divisional representatives of CCF in

Wellington, Christchurch, Dunedin and Invercargill. In Wellington, Dunedin and

Invercargill parents of patients currently or recently having treatment joined the

discussions for part or all of the meeting. The discussions were always robust but

consistent in content and reflected the views expressed in the detailed submission by

CCF to the National Speciality Review in February 1998. This stated‘..although a

good clinical outcome is unarguably a paramount requirement of any clinical

intervention, a good psychosocial outcome is of equal importance, and cannot be

separated as a primary goal’.The submission went on to state that‘Any change in

service delivery must include plans to support the family adequately and consistently,

wherever the service is situated’. There is considerable anxiety within the Foundation

that cost implications of service reconfiguration may be shifted to the voluntary sector

and there was a strongly expressed view that existing social support arrangements are

inadequate and inequitable in different regions of the country. The Foundation’s

official line is that the issue of configuration is a matter for professional decision but

the families in Dunedin and Invercargill were especially insistent that the quality of

care for child and family could be diminished if Dunedin and Christchurch were to

merge. Their concerns were based not only on their satisfaction with the service they

currently receive but also on fears that the additional distance to Christchurch would

damage families by additional financial stress and prolonged hospital admission; if

this change is to be implemented it will be essential to ensure that robust shared care

arrangements are available to support as much care as possible close to home – this

must include the continuing provision of secondary level care at Dunedin and

Invercargill. The CCF representatives in Wellington were also concerned about the

future of Wellington as a tertiary centre, particularly as families would be expected to

travel to either Auckland or Christchurch for care despite the relative proximity of

Wellington for most of the families currently treated there.


25

5. Economic Analysis

An economic analysis of paediatric oncology services in New Zealand was undertaken

by Pim Borren and Associates as a special project for the National Review and a

report was published in July 1998. The findings of this report were made available and

a meeting was held with Mr Borren to discuss his conclusions.

The report addressed the service issues and resource implications for a change in the

existing configuration from the status quo (four centres) to a single national centre in

Auckland and considered the intermediate possibilities of two or three designated

tertiary centres. Although it was clear from discussion with clinicians in all the centres

that there were reservations about the robustness of the economic appraisal, the

overview reached by Mr Borren was broadly similar to the findings which emerge

from this special review. His report identified difficulties with the existing

arrangements and set out the advantages and disadvantages of the alternative

configurations. The following were the main observations:

• Peer support and possibilities for sub specialisation are problems for all centres

except Auckland.

• Only Auckland has a separate and designated clinical area for paediatric oncology

• Families and their representatives favour local service delivery as far as is possible

although treatment quality and outcome remain their primary concern.

• There is a lack of consistency between the existing centres in their approach to

treatment.

• Although a one centre model offers economies of scale in treatment provision and

service management, this may be offset by the additional travel and

accommodation costs incurred by families, by their potential loss of income from

disruption of employment, and by the increased costs of shared care.

• The reconfiguration of all services to Auckland would incur significant capital

cost at Starship, and the merger of Dunedin with Christchurch would require

refurbishment / extension of the facilities at Christchurch.

• The need to redirect revenue cost support would need to be addressed between the

centres concerned – arrangements for achieving this are not easily identified at

present.


26

• There are quality gains to be made by designating a single national service with a

single contract for service provision within the most appropriate agreed

configuration.

The terms of reference for this review include an assessment of the affordability of

any proposed solution – the economic arguments in Mr Borren’s report have been

carefully derived from the information available to him although it is inevitable that

some assumptions were made. The excess cost of patient support (estimated at

$2million per year) if services were centred only on Auckland is therefore a real issue

which must carry some influence within the final recommendations for the

configuration of services.

6. Recommendations

1. Overview

1.1. There are compelling professional reasons to accept the view that the status quo

is not an option. It is not possible to continue to justify the provision of tertiary

care in Dunedin and there is uncertainty about the viability of a tertiary service

in Wellington. The survival of Christchurch as a tertiary level provider is

justified by the increased patient population which will result from a merger of

the service currently provided in Dunedin and by the more robust support

available from related specialities in comparison with either Dunedin or

Wellington. Auckland has a service which is viable whether or not additional

patient referrals result from a reconfiguration elsewhere.

2. A National Children’s Cancer Service.

2.1. The establishment of a single National Children’s Cancer Service is a priority.

This must operate across all sites of treatment delivery and carry authority with

all professionals involved in the care of children and young people with cancer.

It should not be possible for any centre providing care for children with cancer,

and receiving funds from the HFA for doing so, to stand outside the authority of

the service.


27

2.2. The key elements of the national service would include the following:

2.2.1 Establishment of a central data office responsible for receipt of registration and

clinical trial data for all patients treated in New Zealand aged up to 18 years,

and for the production of an annual report detailing incidence, referral patterns,

clinical trial entry and outcomes for all patients in the country.

2.2.2 Compulsory central registration of all cases seen in the tertiary oncology units

2.2.3 A portfolio of clinical trials for all major diagnostic groups agreed between all

clinicians and implemented consistently between treatment centres.

2.2.4 The provision of adequate data management support to the tertiary centres to

assist in the registration of diagnoses, clinical trial entry and progress, and

patient outcomes.

2.2.5 The organisation of a monthly or bi monthly national tumour board, facilitated

by telemedicine technology and involving all the tertiary centres, in order to

discuss problem cases and share difficult treatment decisions.

2.2.6 The development of a standard approach to the accreditation of shared care

centres by each tertiary centre.

2.2.7 The organisation of an annual national paediatric oncology meeting, open to all

staff involved in the care of children with cancer, including shared care

centres, with a joint focus on education, research and service delivery.

2.2.8 The development of a framework of assessment for quality assurance in each

centre (and its shared care affiliates) by a process of both internal audit and

external institutional review.

2.3 The National Children’s Cancer Service should take responsibility for leading

the negotiation of resource investment with the HFA, particularly in ensuring

that funding follows service reconfiguration, is made available to support

treatment developments and is directed to ensure the adequate and equitable

support of families of children receiving treatment. The costs of the national

data office and secretariat and for data management in tertiary centres should be

met by the HFA within the budget for the national service. The budget should be

devolved to each tertiary centre, including the resources for their shared care

support.


28

2.4 The National Children’s Cancer Service should maintain an open and supportive

relationship with the national executive of the Child Cancer Foundation and

CanTeen, and actively encourage each centre to develop local resources for the

support and education of parents and carers.

2.5 The creation of the National Children’s Cancer Service will require the

appointment of a steering committee with representation from paediatric

oncologists at each of the tertiary oncology units, and from representative shared

care centres, nursing and other clinical staff, the Child Cancer Foundation,

hospital management and the HFA. The steering committee should be charged

with the development, within 6 months, of an agreed constitution and terms of

reference for the National Children’s Cancer service and for the appointment of

a co-ordinator of the data centre within a further 6 months, i.e. the central

structure should be in place within 1 year of acceptance of this recommendation.

3. Specific Recommendations for Action in Individual Centres

3.1 Christchurch / Dunedin

3.1.1. The service currently provided in Dunedin should cease to function at a tertiary

level and merge with the service in Christchurch. This implies that Dr Sullivan

should transfer his main centre of activity to Christchurch Hospital and, with

Dr Corbett, establish a Southern Regional Paediatric Oncology Service. This

service should have an identified budget to include the costs of shared care for

which service level agreements can be implemented.

3.1.2. This service, like that provided from other centres nationally, must be built

around robust shared care arrangements designed to maximise provision of

care locally and minimise the duration of stay for families in Christchurch.

3.1.3. The level and complexity of shared care must be agreed between the centre and

each shared care hospital as part of an accreditation process which defines

mutual responsibilities and expectations in a way which is explicit for all

parties, including and especially the child and family (see appendix).

3.1.4. The redevelopment of the paediatric facilities at Christchurch Hospital must

adequately address the needs of the service, including day care and outpatient


29

facilities and protective isolation facilities for inpatient care up to a level which

supports bone marrow transplantation. Once such facilities are provided,

transplantation should no longer be undertaken for children aged < 15 years on

the adult unit but the managerial and professional arrangements must ensure

that there is close collaboration between the BMT unit staff and the paediatric

oncology unit in the selection of patients, planning of treatment and in

provision of supportive care. Without this facility and / or agreed collaboration

it will not be appropriate to retain paediatric bone marrow transplantation in

Christchurch and under such circumstances patients should be transferred to

Auckland.

3.1.5. The process for achieving the service transfer from Dunedin must be subject to

the development of an agreed action plan which will identify how the service

transfer should take place, what the implications are for staff in both centres,

and what resources are required for the development of the necessary facilities

in Christchurch. The work required to agree the action plan should ideally be

completed by the end of December 1999 and no later than the end of March

2000. The pace at which the service should transfer will be determined, in part,

by the paediatric department development plans in Christchurch but should

ideally be complete within 1 year of the date of completion of an agreed action

plan (i.e. by the end of March 2001 at the latest).

3.1.6. The service transfer must at all times respect the sensitivities of the families of

patients already under treatment and must maximise the continuing use of

Dunedin as a provider of high level shared care, and should seek to extend the

existing level of shared care provision at Invercargill.

3.1.7. Christchurch will become the single national referral centre for patients with

retinoblastoma.

3.1.8. It is expected that, except in exceptional circumstances, one of the two

paediatric oncologists will be available in Christchurch at all times (including

arrangements for cross cover for annual and study leave).

3.1.9. The newly designated Southern Regional Paediatric Oncology Service should

assume, with support from adult speciality colleagues, responsibility for the

care of adolescents / young adults up to the age of 18 years with cancer. The

location of treatment between the adult and paediatric facilities will in part


30

depend on the preference of the young person but responsibility for care should

reside primarily with the paediatric oncologists.

3.1.10. Once the merger with Dunedin is completed, the service should, with the

management of Christchurch Hospital and Canterbury Health, agree a five year

strategic plan it is likely that this will include the appointment of a third

specialist paediatric oncologist / haematologist.

3.2 Wellington

3.2.1 Wellington should remain as tertiary centreonly if it becomes possible to

achieve adequate senior staffing support. This primarily relates to the

appointment of a second specialist paediatric oncologist who is able to offer a

minimum 0.5 FTE to the service and to provide a 1:2 contribution to the on

call rota, including cross cover for the absence of Dr Nicholls.

3.2.2 Recruitment to this post must be implemented without delay and active steps

to recruit to this position must have been implemented by the end of December

1999 at the latest. If a permanent or temporary appointment cannot be achieved

within a further 9 months, the continuing status of Wellington as a tertiary

centre will be untenable and plans will need to be implemented to agree the

transfer of patients to either Auckland or Christchurch for diagnosis and

treatment planning.

3.2.3 If it becomes necessary to down scale the designation of the Wellington

service, the arrangements for transfer of care must at all times respect the

sensitivities of the families of patients already under treatment and should

maximise the continuing use of Wellington as a provider of high level shared

care. Dr Nicholls must be given the option to transfer his employment to either

Auckland or Christchurch depending on personal preference and on the

predicted direction of patient referral, from where he would be able to continue

to support the shared care service with outreach clinics.

3.2.4 If recruitment of a specialist paediatric oncologist is achieved within the

specified time scale, the further needs of a continuing tertiary service in

Wellington must be subject to an appraisal and action plan. This should

include the necessary upgrading of facilities, agreed additional responsibility

for patients aged up to 18 years of age and the development of a shared care


31

framework with referring centres. The time scale to achieve this should be

within 1 year of the appointment of the second paediatric oncologist.

3.2.5 Wellington should not develop facilities for bone marrow transplantation and

will need to refer all patients requiring such treatment to either Auckland or

Christchurch.

3.2.6 Wellington should not develop facilities for the treatment of children with

retinoblastoma and will need to refer all such patients to Christchurch.

3.3 Auckland

3.3.1 No significant changes to the service provided at Starship are recommended

although if Wellington fails to meet the requirement for continuing tertiary

status there are likely to be implications in relation to an increased throughput

of patients (a minimum estimate would be 50% of the existing workload in

Wellington = 12 – 15 patients per year). Provision for this increase in capacity

should be borne in mind in relation to the plans to develop services on the

Auckland Hospital / Starship site.

3.3.2 The current need to recruit at least one more full time paediatric oncologist

should be progressed without delay: once achieved this would afford an

opportunity for the staff to review sub speciality commitments with a

particular focus on the support required for neuro oncology and bone marrow

transplantation.

3.3.3 Starship will remain the largest service provider in the country. It should

therefore adopt some natural leadership within the concept of a single national

service and particularly in terms of national educational programmes for

medical, nursing and other staff. It would benefit from a review of its existing

academic status and ambitions.

3.3.4 Further development and support to shared care partnerships should remain a

focus for active consideration.

3.3.5 Specialised surgical services for patients with bone tumours and liver tumours

should probably be developed in Auckland: this requires clarification with the

paediatric and orthopaedic surgical services on a national basis and, once

agreed, be subject to strict referral policies.

3.3.6 Patients with retinoblastoma should be referred to Christchurch.


32

3.3.7 Services for young people to the age of 18 years should be developed jointly

with adult haematology oncology colleagues on the Auckland Hospital site but

the paediatric oncologists should expect to play an active role in their

management and to be responsible for registration and clinical trial entry.

4 Patients and Families

4.1 The HFA should, as a matter of urgency, establish a forum for discussions with

representatives of the health professionals and the Child Cancer Foundation

about the appropriate level of financial and practical support for families who

need to travel away from home to obtain treatment. The outcome of this forum

must influence the review of the transport and accommodation policy currently

being undertaken by the HFA.

4.2 The recommendations of this special review should be shared with the CCF and,

if implemented, arrangements must be established to ensure that the CCF are

kept aware of the way in which service configurations will change, and over

what time scale these are expected to be implemented.

4.3 Representatives of the CCF (and CanTeen) should be invited to participate in

the steering committee created to oversee the creation of the National Children’s

Cancer Service, and in the structure created to agree the action plan for the

Dunedin : Christchurch merger. They should also be actively engaged in the

work resulting from the future plans affecting services in Wellington.


33

7. Appendices

National Service Specification – Suggested Standards of Staffing andResource for Tertiary Centres

The number of patients referred each year is an important influence on the

development of skills and resources within an individual centre but it is not the single

determining factor in achieving this. In order to ensure adequate quality of care it is

expected that all Tertiary Centres should comply with the following standards to

provide safe, consistent and optimal care for children with malignant disease.

1. The clinical service must be directed by a specialist paediatric oncologist or

haematologist who has demonstrable training and experience in the care of

children with malignant disease. The number of consultant staff available should

be sufficient to provide continuous specialist supervision (see also 5 below). The

consultants are expected to be active participants in the activities of the

ANZCCSG and to be involved in other aspects of appropriate continuing medical

education within the speciality.

2. Children must be nursed by appropriately qualified and experienced nursing staff

within a designated children’s ward area with adequate isolation facilities and at

staffing levels which support a level of dependency consistent with the intensity of the

care required. Nursing staff should be managed by a senior nurse who has special

experience in the care of children with malignant disease. In patient, outpatient and

day care facilities should appropriate for the safe management of

immunocompromised patients and should meet the needs of resident parents and

siblings and accommodate other visitors.

3. The Centre must have 24 hour access to a specialised paediatric surgical service

supervised by a paediatric surgeon with a special interest and expertise in

paediatric surgical oncology, and supported by consultant paediatric anaesthetists.

Easy access to other paediatric specialities including paediatric neurosurgery,

intensive care, renal, cardiac and respiratory services is essential. Diagnostic and

support services with paediatric expertise including clinical and laboratory


34

haematology, blood transfusion, histopathology, clinical chemistry, microbiology,

and radiology should normally be provided on site and offer 24 hour support to the

clinical service.

4. The overall care of all patients should be under the supervision of a specialist

consultant oncologist or haematologist at all times and supported by junior

medical staff who must receive adequate supervision and participate in appropriate

postgraduate training.

5. There must be 24 hour access to expert medical and nursing advice for patients

and their families, shared care centres, general practitioners and community

nursing teams, and for the referral of newly diagnosed patients

6. There must be close collaboration with a radiotherapist(s) with particular expertise

in the care of children and easy access to radiotherapy facilities with staff

experienced in the management of children. Staff (play therapists, nurses) should

be available for the preparation of children for radiotherapy and accommodation

must be provided for those families who are unable to travel daily from home for

treatment. There must be policies and procedures for the safe supervision of

children receiving sedation or anaesthesia and appropriate facilities for children

and their families whilst waiting for treatment.

7. The centre should have the services of a pharmacist with special expertise in the

preparation of cytotoxic drugs and facilities for the central reconstitution of

chemotherapy and safe preparation of other specialised medications including

parenteral nutrition.

8. The centre should have on site play therapy and educational support with

provision for liaison with children’s schools.

9. A specialist social worker(s) must be available for the support of families and

access to psychology services is required for the support of children and staff.


35

10. There should be a designated nurse(s) whose role is to support the family in the

community and to liaise with primary health care teams and shared care centres.

11. Policies and provision for paediatric palliative care (both in hospital and at home)

should be defined and arrangements available for the offer of bereavement support

and counselling.

12. A comprehensive late effects programme should be in place and include the

systematic surveillance of survivors with suitable arrangements for their continued

care and follow up into adult life.

13. All eligible newly diagnosed patients must be registered with the Data Centre for

the National Children’s Cancer Service and a local data base should be available

to ensure that their subsequent survival status is readily determined. Co-operation

with requests for follow up information from the Data Centre is expected and

there should be a clear commitment to participation within collaborative national

and international trials, particularly those supported by the ANZCCSG.

14. The centre must agree to provide diagnostic material (tissue, radiology etc.) for

central review as specified within each protocol and to contribute biological

material if required within the context of a clinical trial.

15. The centre must be able to demonstrate its active participation in local clinical

audit and to develop and maintain clinical policies consistent with national

recommendations and current knowledge.

16. Protocols and policies should be available for easy consultation by all staff and

adequate data management support provided to facilitate registration and clinical

trial returns in line with standards defined by the National Data Centre.

17. Representation from the centre will be required at each national tumour board and

annual meeting of the National Children’s Cancer Service.


36

18. The centre must be able to demonstrate compliance with local and national

research ethics requirements and provide appropriately worded information and

consent forms for entry into clinical trials. Copies of local research ethical

committee approvals must be submitted to the National Data Centre prior to

recruitment into any new study.

19. Collaboration with, and support for parent groups is encouraged.

20. Centres participating in shared care arrangements with regional hospitals are

expected to have established protocols for collaborative care. Whilst shared care

centres are unlikely to be expected to offer care of the same complexity as at the

main treatment centre, the Tertiary Centre is responsible for ensuring that the

quality of care offered at a shared care centres is of the same level available in its

own unit and that the data requirements from patients treated in clinical trials are

met.

Acknowledgement:These service specifications are derived from standards proposed by the United

Kingdom Children’s Cancer Study Group in 1997“The Resources and Requirements of a UKCCSG

Centre”.


37

Suggested Guidelines for the Designation and Accreditation of SharedCare Units

IntroductionThe benefits of shared care for families include easier access to general and

emergency care, with less travel and less cost to the family. There may be better

liaison with general practitioners and community services. Balanced against this are

the negative sides of shared care which include; less frequent access to specialist

oncology nursing/medical personnel, less easy access to dedicated support workers

(social workers, play therapists etc.), need for increased communication with centres

and consequent demands on medical staff time, ensuring chemotherapy protocols are

adhered to and clinical trial forms completed appropriately.

Successful shared care is a partnership between the tertiary centre and the local

hospital or primary care practitioner. This partnership needs to be encouraged at all

levels and between all disciplines, not just medical staff. The importance of the role of

nursing staff, pharmacists, social workers, and primary health care teams etc. involved

with the management of oncology patients and families attached to shared care units

cannot be underestimated.

The aim of shared care is to deliver safe, effective and appropriate treatment closer to

the patient’s home. The needs of the patient will be best served by a unified and co-

ordinated approach, and it is necessary to define formally the expectations between the

tertiary centre and the shared care centre in terms of responsibility for the delivery of

care. This will largely depend on the level of staffing and the skill and experience of

staff in the shared care centre. However, this is a two way process and staff in the

tertiary centre must commit themselves to providing necessary skills training, regular

updating of staff, provision of detailed written guidelines and protocols, easy access to

advice and, when possible, the provision of outreach clinics.

In considering how different levels of shared care can be defined it is possible to

divide the provision of care into four distinct areas, broadly representing increasing

levels of complexity.


38

Level 1 = Management of outpatient chemotherapy

Level 2 = Management of inpatient chemotherapy

Level 3 = Management of febrile neutropenia

Level 4 = Induction of chemotherapy for acute lymphoblastic leukaemia

Tertiary centres must work with colleagues in regional hospitals to agree and accredit

each shared care centre at a designated level of care.

Responsibilities of Medical Staff

• Each shared care centre must designate a local paediatrician as the shared care

consultant.

• Whenever possible another local paediatrician should be available to provide

backup for the designated shared care consultant during periods of leave/absence.

• The shared care consultant will be responsible for the care of all oncology patients

seen at, or admitted to the shared care unit.

• The shared care consultant will be responsible for ensuring that patients are treated

according to the current recommendations and guidelines of the Tertiary Centre

and that clinical trial forms are accurately completed and returned in a timely

manner.

• The shared care consultant will participate in, and regularly attend update meetings

organised by the Tertiary Centre.

• There will be a designated shared care clinic for oncology patients normally held

weekly, either as a separate clinic, or part of an established general paediatric

clinic. Shared care patients should see the shared care consultant at all visits

wherever possible.

• New appointments to the shared care consultant post should be discussed with the

Tertiary Centre. Potential candidates should demonstrate adequate

training/experience in paediatric oncology/haematology or be prepared to acquire

this by an attachment to the Tertiary Centre.

Responsibilities of Nursing StaffThe shared care units should identify one senior nurse to act as the oncology link

nurse with the Tertiary Centre. This post-holder should have regular contact and a

major “hands on” involvement in the management of oncology shared care patients.

Depending on the shared care unit this nurse may be ward or clinic based, or


39

employed specifically only in this role. The oncology link nurse will have a co-

ordinating role between the nursing staff within the shared care centre, the local

community-based nursing teams, and the nursing team at the Tertiary Centre.

Shared Care Centre Facilities

• All shared care inpatients should be admitted to a designated paediatric medical

ward. Every attempt should be made to avoid contact with infectious patients either

by admitting oncology patients to cubicles, or housing other potentially infectious

patients in cubicles.

• Shared care units are expected to have regular contact with the consultant(s) at the

Tertiary Centre to update ongoing patient management particularly if there are

children in the shared care unit who are unwell.

• All units administering chemotherapy should have a pharmacy department familiar

with the reconstitution and administration of cytotoxic drugs. A local cytotoxic

policy should be in existence. Cytotoxic drug reconstitution should be undertaken

in the pharmacy department, not on the ward by medical or nursing staff. Staff

handling and administering chemotherapy must be familiar with extravasation

procedures.

• Units administering intrathecal chemotherapy should be particularly vigilant in

ensuring that only drugs designated for intrathecal use are administered to

anaesthetised children. A written policy covering this issue should be introduced in

hospitals undertaking this work. Vincristine and other drugs intended for

intravenous use should never be available at the time of intrathecal drug

administration.

• Shared care units will be expected to undertake procedures and treatments as

agreed with the Tertiary Centre in line with the level of shared care for which the

unit is accredited.

Responsibilities of the Tertiary Centre

• The Tertiary Centre shall be responsible for overseeing the initial management and

diagnostic investigations and treatment planning of suspected oncology patients.

Wherever possible, shared care units will be encouraged to participate in this

process and to contact the Tertiary Centre at the earliest possible convenience.


40

Some investigations, particularly surgical procedures and biopsies should be

undertaken only at the Tertiary Centre and early discussion should be encouraged.

• Reassessments (e.g. bone marrow assessments, imaging etc.) will normally only be

undertaken at the Tertiary Centre.

• The Tertiary Centre will keep the shared care consultants regularly updated with

new protocols and information from the ANZCCSG etc. concerning treatment of

oncology patients.

• The Tertiary Centre will host an annual update meeting for shared care consultants,

other interested medical staff, oncology link nurses and other interested nursing

staff, paramedical and pharmacy staff. This will be an educational update on new

protocols and treatments as well as a opportunity to review current policies and

shared care arrangements.

• The Tertiary Centre will offer practical paediatric oncology experience for nursing

staff at shared care units.

• The Tertiary Centre will ensure that effective lines of communication are in place

and that access to advice from a consultant oncologist/haematologist will be

available 24 hours/day.

• Effective communication between nursing staff will be encouraged. The major

focus will be through the oncology link attached to each shared care unit. Nursing

staff from shared care units will also be encouraged to discuss out of hours

problems with the senior nurses on the oncology ward at the Tertiary Centre.

• The Tertiary Centre will be responsible for the production of a Shared Care Policy

Folder and for ensuring that this is regularly updated and revisions forwarded to

shared care units.

• Consultants at the Tertiary Centre will be required to ensure consistency in their

approach to shared care both in relation to their use of shared care centres and in

the shared care of children with the same diagnoses.

Summary of Shared Care Unit Requirements for Designated Levels of Care

All Units for all Levels of Care:

• Designated shared care consultant

• Nominated deputy for shared care consultant

• Oncology link nurse


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• Commitment to continued education and training of medical, nursing and

paramedical staff

Level 1 Care (Outpatient Chemotherapy Administration)

• Designated consultant-led clinic session(s)

• Availability of specialist pharmacy services for reconstitution and safe handling of

chemotherapy

• Clear policies for the safe handling and administration of cytotoxic drugs and

management of extravasation

• Nursing staff trained in the use of central venous catheters

Level 2 Care (Inpatient Chemotherapy Administration)

• Patients admitted to paediatric medical ward, protected from potentially infectious

patients

• Resident out of hours paediatric middle grade medical staff or equivalent

emergency cover


chemotherapy



• Shared care units will not administer chemotherapy regimens containing high dose

methotrexate

Level 3 Care (Management of Febrile Neutropenia)


patients


emergency cover

• Ability to provide short term intensive care support to children including inotropic

medication and assisted mechanical ventilation

• On site microbiology support


42

Level 4 Care (Induction of Chemotherapy for Acute Lymphoblastic Leukaemia)

• All patients to be discussed with Tertiary Centre prior to initiating treatment


patients

• Nominated consultant haematologist experienced in the

investigation/interpretation of paediatric bone marrow samples

• Ability to provide samples for immunophenotyping on blood/bone marrow

• Ability to provide samples for cytogenetic/molecular biology on blood/bone

marrow

• Ability to provide all diagnostic and protocol-derived blood/marrow/csf samples

and all samples necessary for central review

• Commitment to forward complete and timely clinical trial forms to the Tertiary

Centre

• Diagnostic slides to be available for review by Tertiary Centre within 7 days of

diagnosis


chemotherapy




emergency cover

• Ability to provide short term intensive level support to children including

inotropic medication and assisted mechanical ventilation

• On site microbiology support

Acknowledgement: These shared care guidelines are based on those used at Birmingham Children’s

Hospital and were developed by Dr Bruce Morland.


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8. Acknowledgements

This report is based on information gathered and impressions formed during work

undertaken during my visit to New Zealand from July 19th - 25th 1999.

I would like to offer my thanks to the many members of staff (clinical and managerial)

whom I met at each of the centres I visited during of my evaluation. All freely gave up

their time to meet me and were courteous and honest in discussing the strengths and

weaknesses of their own units and willingly offered constructive ideas about the

optimal configuration of Tertiary Services for children with cancer across New

Zealand.

I am especially grateful to the representatives of the Child Cancer Foundation and of

CanTeen for their careful and professional appraisal of the clinical services available

and for representing so clearly the needs of the families of children with cancer. I must

particularly acknowledge the parents I met who spoke so movingly of their own

personal experiences and of their fears of change to the clinical services which have

meant so much to them.

Mr Pim Borren offered helpful additional explanations of his economic analysis of the

paediatric oncology services in the existing centres.

Finally, I would like to thank Sam Cliffe and Gabrielle Collison from the HFA for

their support in making the arrangements to facilitate my evaluation in so short a visit

and for providing information about the past and current organisation of services in a

manner which was always clear but impartial.


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9. References

In addition to various documents prepared by each centre to support their

presentations during my visit, I was provided with copies of the following key

documents:

• National Child Health Strategy, Ministry of Health. 1998

• National Review of Paediatric Speciality Services, “Through the Eyes of a Child”,

Health Funding Agency and the Paediatric Society of New Zealand. 1998

(including the detailed report of the Paediatric Oncology Review Committee and

the submission made by the Child Cancer Foundation)

• Economic Analysis of Paediatric Oncology Service Options in New Zealand, Pim

Borren and Associates. 1998 (including also an early draft of the 1999 update to

this report).

Michael Stevens MD, FRCP, FRCPCH

Birmingham

August 1999

Documents

The Provision of Children’s Cancer Services in New Zealand ...file/Provision_childrens_cancer_services_NZ.pdf · •the establishment of a paediatric oncology nursing education