Cancer Plan for Children and Young People in Scotland 2012-15

Appendix 1

International Comparators

The MSN board has made contact with a number of clinicians in other countries. International literature has also been reviewed. Responses and particularly helpful comments have been obtained from New Zealand and Scandinavia and we would wish to acknowledge the contributions made by other countries to our proposed design for our MSN.

Whilst the experience of paediatric oncology services in other countries is an important influence on how the Scottish service should operate, there are necessarily limitations on this influence. The differences between Scotland and many other countries are easier to identify and articulate than are the similarities.

The main differences which distinguish Scotland from other international models surround:

• The low volume of cases per year.
• The distribution of the Scottish population in relation to the landmass (>50% of the population is contained within 3 health board areas).
• The uneven distribution of resources (2 large University children's hospitals 50 miles apart).
• Challenges of climate and geography and hence, travel.
• Quality of national clinical databases.
• The link between general practice and paediatric specialties.

Based on these elements, several countries stand out as important exemplars and sources of experience.

Norway

With a population of 4.7 million people containing 975,000 children under the age of 16, Norway is divided into 4 geographical and administrative health regions (Southeast, West, Middle, and North) with one serving University Hospital in each region. 55% of the population live in the south-eastern health region but all 4 regions treat their own children with little in the way of cross regional flow (with the exception of the densely populated Stavanger region (Rogaland) which is traditionally referred patients to the National Hospital in Oslo instead of Bergen to which the patients geographically belong. This has historic, logistical as well as political reasons).

Reports to the Norwegian Cancer Registry are compulsory and there are regular national meetings between paediatric oncologists and other clinicians to exchange experience and ensure common practice. Divergence in treatment strategies between the regions are infrequent and although adherence to protocol may theoretically vary there is an extensive collaboration between centres and frequent use of second opinion reviews by pathologists.

Sweden

Sweden has consolidated paediatric care in recent years by merging smaller hospitals and devising "chains of care" to ensure integration across community, primary and specialist care. First access is provided by general practitioners trained in paediatrics working closely with paediatricians and children's nurses in local health centres. The model of co-locating general practice and paediatrics in health centres could potentially make an impact upon the early diagnosis of childhood cancer in Scotland and has implications for multidisciplinary education including primary care.

The Netherlands

Holland has a general practice system similar to the UK but it operates within a "transmural" system designed to bridge the gap between primary and secondary care. A near universal youth service provides a range of services to children from birth to 19 years including health promotion and disease screening. The service supports education and exchange of shared guidelines and the jointly managed service between primary care and paediatricians has direct incentives to cooperate.

Canada

With scale and a widely distributed population being a major challenge, children's Cancer services in Canada are delivered from 17 different centres to accommodate their 1300 new cases of cancer per year in children under age 18. The directors of these 17 treatment centres constitute "C 17" the Council of Directors and it is this body that ensures that research, education, communication and engagement is consistent across Canada. Whilst each clinical unit functions in an individual fashion, policies and programs are consistent as is commitment to trial entry, (C 17 has 185 clinical trials open as members of COG (Children's Oncology Group). Trials are approved by Health Canada and C 17 enjoys strong educational grant support with regular substantial charitable donations to the C 17 council which is able to effect a pan-Canada oncology service in spite of the geographic challenges posed by its landscape and climate. A frequently unrecognised feature of the Canadian population is its ethnic mix with 19.8% of the Canadian population being immigrant adding the additional feature of diversity into the challenges posed to the clinical service.

New Zealand

The National Health Board and Ministry of Health has produced a National plan for children's cancer services in New Zealand which is the first national service plan to be developed. This plan has responded to increasing subspecialisation, quality and safety concerns and has resulted in consolidation of specialist oncology centres from 5 throughout the country in 1995 to 2 by 2011: one in North Island (Auckland-100 cases per year) and one in South Island (Christchurch, with shared care with Wellington-50 cases per year). Like Scotland, the service has approximately 150 new cases of cancer diagnosed per year with just over 300 children receiving active therapy at any point in time. The service was considered vulnerable because of the small paediatric oncology workforce available and the need for service reconfiguration was highlighted with the un-planned closure of a regional service destabilising services in South Island.

The New Zealand model formalises shared care arrangements and plans to develop a national clinical network built on the foundation of the existing paediatric oncology steering group. The balance between minimum numbers for a viable unit, maximizing clinical outcomes, minimizing disruption to family, and ensuring access of all patients to a consistent and high level of care are all key considerations and objectives of their network.

Several messages emerge from these countries which are relevant if not important items for our service. Pointers can be taken from each as follows:

• Provider volume is not itself the sole proxy of quality of care in paediatric oncology.
• The link between primary and secondary care is key to early referral and collaborative working.
• GP training in paediatrics and making the" first point of contact" as expert as possible is a key educational objective.
• Achieving consistent policy and practice in the face of differing geographies problems and experiences requires collaboration best served by integration into a single service network.
• Investment in today's trials produces tomorrow's optimal outcome treatments.
• Most centres in the world have too few patients to conduct large studies; international collaboration between sites is a prerequisite.
• Commitment to a national database is essential in order to facilitate outcome analysis on the mid to long term and provide the requisite assurance of quality of care.

Just as the MSN aspires to represent the component parts of the service within Scotland, so is it important that its horizons are sufficiently wide to encourage collaboration with not only our immediate neighbours in the United Kingdom but also with international collaborators. There is relatively little collaboration between North America and Europe and the MSN should seek collaboration in clinical provision and trial and research enterprises on an equitable basis with all willing partners.