Specialised Paediatric Services in Scotland 1 Specialised Services Definition Services provided for low numbers of patients. They require a critical mass of staff, facilities and equipment and are delivered from a limited number of centres. They are usually at the leading edge of technology or pharmacology and are thus subject to rapid change. There are interdependencies between caring for patients and the demands of research, education and training of small numbers of staff. They include services currently designated as national services and tertiary services and have a population base of at least 1 million. They serve: Children and young people with rare and severe medical problems Children and young people with severe forms of more common conditions Children and young people with common problems complicated by co-morbidity children requiring certain procedures who are at risk by virtue of their age (less than 44 weeks post conceptual age) children who fail to respond to conventional therapy 2 Age Profile Services should be provided in an age sensitive environment which meets the particular needs of children and their families. Paediatric acute and specialised services cover children up to their 16 th birthday. This includes preterm and low birth weight babies and neonates the first 4 weeks after birth. The raising of the age ceiling for children admitted acutely or requiring care or investigation in a hospital setting may sustain activity to support care provision locally as well as improve care for children and their families. However it may have significant financial implications in terms of staff and facilities. The specific needs of adolescents should be provided for, both in terms of the environment for their care and in the management of the transition from paediatric to adult health care professionals. A policy statement on transitional care should be agreed for NHS Scotland as this is a SEHD priority area. 3 Range of Specialised Paediatric Services Scotland will formally adopt the range of Specialised Paediatric services as set out by the Department of Health Specialised Services Definition set, principally Definition 23 Specialised Services for Children, however there are a number of other definitions, eg Specialised burn care services, which cover all ages and should be adopted for paediatrics. A standard data set for specialised services should be agreed to support clinical audit, service planning and review. There should be a mechanism for regular review of these definitions including the agreement of criteria, to identify new specialised services and services which become mainstream. The approach used currently by NSAG can be built 1
on looking at the experience of NSCAG and the specialised commissioning groups in England. 4 Current organisation of services Health Boards are responsible for ensuring the provision of healthcare for their population. Specialised paediatric services are provided mainly through the 3 children s hospitals in Aberdeen, Edinburgh and Glasgow, with a range being supplied from Ninewells Hospital in Dundee and other adult hospitals in Scotland. Where these services are not provided within a Health Board s area, the Health Board makes arrangements for their provision with one or more of the Health Boards in whose area the service is provided. These arrangements include payment for services, however the financial structure does not always identify specialised services discreetly within these arrangements and there is risk of under recovery of costs, particularly as specialised services are usually high cost. Some specialised services are provided outwith these hospitals, eg neonatal care, neurosurgery. A small number of services are designated as national services, which are funded through separate funding streams and managed by the National Services Division, who also manage the arrangements for the small number of services provided outside Scotland. 5 Numbers of patients Provisional information has been drawn from SMR01 records to scope the extent of specialist paediatric care in Scotland and particularly the number of children who travel outside their Health Board of residence for care. The data extracted to date is very limited, based on RHSCE & RHSCG and specialty Neurosurgery at the Western General Hospital in Edinburgh and the Southern General Hospital in Glasgow. Over the 4 years to March 2003 just under 45,000 children were treated outside their Health Board of residence in just under 63,000 episodes of care. This is roughly 11,000 children per year which equates to roughly 1.25% of the population <15 years of age during that time. Of these roughly 54% were elective, 31% emergency and 15% transfers. Further data is being drawn to scope the total volume of activity to inform the proportion of children treated who travel. Analysis of this data in this way does not take account of the geography of Health Board boundaries, ie where a child might live in one Health Board area, but be closer to hospitals in a neighbouring Health Board area, or referral patterns. Further analysis using clinical intelligence, diagnosis, referral patterns is required together with geographical mapping. 6 Relationships between care providers Children will access specialised services through a number of routes. Some may be identified at birth as requiring specialised care and be referred from a local hospital maternity unit to a specialist neonatal or paediatric centre. Others may be identified by primary care teams and referred to local paediatric services who refer on to specialised services in a sub speciality area. The final group are those that access emergency services, via SAS to Accident and Emergency Departments. Provision of specialised care is one element of the total care given to children and support/care is generally provided on an ongoing basis by community child health and primary care teams within local settings. 2
Specialised care frequently requires significant support from technology and specific equipment and specially trained staff, particularly where surgery is involved. Thus it is inefficient and uneconomic to have duplication of this across a number of sites, though improved efficiency can be achieved if services are co-located with adult and neonatal services. However specialists should work on an outreach basis and with colleagues in other centres to deliver local diagnosis and follow up. This will also support and encourage more integrated care for children and local multi-disciplinary teams in skills development and maintenance. When decisions are taken concerning the provision of specialised care, consideration should be given to the impact on the local supporting infrastructure, and changes planned and implemented in an integrated way. Such working requires investment in technology to support local diagnosis and consultation through the use of telemedicine and review of diagnostic capacity. Paediatric services should be provided as distinct from but co-located with adult and neonatal services. In an emergency situation a child s clinical need is paramount. Specialised care is often at the forefront of medical advances and as such there is a strong link with Universities through research. There is also a co-dependency for teaching, education and development of medical, nursing and allied health professional staff. This has been the traditional role of the University Teaching Hospital. The nature of delivery of care in the future will require association between Universities and a range of healthcare providers across the spectrum of care both for research and teaching and skills development. 7 Paediatric Intensive Care The provision of paediatric intensive care is an immediate issue for NHS Scotland, the trends in activity and casemix may not be sustainable within the current provision. The planning of this service must be integrated with that of paediatric high dependency care and neonatal intensive care. There are critical interdependencies with a number of specialist paediatric services and thus the planning of PICU is a key factor in the planning of specialised paediatric services. The needs assessment carried out in 1997 (SPICA) requires updating and, additionally, a risk assessment should be carried out including the impacts of the proposals in this paper. These should be comprehensive, including all critical care and include activity data, outcome analysis, essential interdependencies and the impact of care delivery and multidisciplinary team approach, including advanced practitioners. This needs assessment should inform the development of a service model which focuses on what needs to be done, when, what types of skills/knowledge are required to do this and what facilities are required - this will define who does this and where it needs to be done. 8 What needs to change and why? The current pattern of service delivery is not sustainable due a number of factors. 3
The population of Scotland and its children is declining and predicted to continue this decline. Even if the recent arrest of this continues, the population is not expected to increase to a material extent over the next 10-15 years. Within this overall decrease the population is expected to continue its migration towards the central belt, with an increase forecast in Fife, Forth Valley, Lanarkshire and Lothian and in Shetland. At the same time as the decline in the population of children, there has been an increase in the number and intensity of affected children conditions and greatly increased survival. The demand for specialised care is increasing against a backdrop of a decline in the supply of the workforce resource required to sustain it. There are public expectations of equitable access to safe, high quality care available locally. There is a gap in current provision for the care of older children and adolescents Access to specialised care is inconsistent across Scotland. Investment in specialised services is made on a differential basis by Health Boards across Scotland. The availability and nature of the workforce is subject to the pressures of demographic change and employment legislation. With an ageing population, falling birth rate and migration out of the country, the number of people in the workforce is declining and employment legislation is restricting the hours that they are able to work. In an NHS workforce that has traditionally been built around a medical model, this must fundamentally change to a multidisciplinary team approach being the norm and the development of different types of healthcare professional eg advanced practitioners, physician assistants, The opportunities afforded by telemedicine are not being exploited to the benefit of patients or clinicians eg teleradiology services are not widely or consistently available and there is a lack of investment in the requisite infrastructure. For specialised services the opportunity to support local diagnosis and treatment must be taken to benefit children. Capital investment in technology and buildings must be directed to best value for money and for providing facilities that are child and family friendly (ref the National Service Framework for Children Standard for Hospital Care (DoH)). 9 Patient journeys and pathways Care plans should be made for every child requiring referral to a specialised service. These will set out the pathway of care of the child through each episode of care and throughout the lifetime of their care and the standards at each stage (Ref NHS QIS Child Health Workplan). Managed clinical networks use this approach based on multidisciplinary working. An example of this is CLEFTSiS the MCN for cleft lip and palate services in Scotland. This network includes an element of nationally funded infrastructure and service (the surgical element) with the majority of service provided locally on a number of sites by a wide range of health care professionals. The network works to an agreed set of standards of care through a child s life up to the age of 20, defining the interventions at each stage and protocols to be followed. It includes parent and child representation in its management arrangements. 4
The UK Children s Cancer Study Group require adherence to protocols for delivery of care which support research into children s cancers. 10 Support systems for families Interaction with specialised services by children and their families is mostly for relatively short periods of time, however it is extremely stressful and potentially financially expensive, particularly for those who have to travel long distances. Support needs to be integrated across the patient pathway and with other agencies, eg social care, and managed by a key worker within the community care team. Support would include the consideration of the educational needs of children during and after their treatment, provision of information, transport arrangements, childcare arrangements for siblings, accommodation for parents and families at the specialist centre etc. 11 Solutions for new century Scotland Child Health should be established as a national priority for NHS Scotland. Scotland s children are its future. In setting out the future consideration must be given to the opportunity from the last Minister for Health and Community Care s announcement on the configuration of Glasgow s maternity services that the gold standard solution is a triple co-location of paediatric, maternity and adult clinical services. I am able to make 100 million available to enable Glasgow to hasten the development of such a service, hopefully within five years. A single specialised paediatric service for Scotland should be established. The service will be a standards driven service with equity of access and consistent treatment secured by a protocol/guidelines approach. This service will be managed by a Board comprising representatives from the Health Boards, including senior clinicians, which will be responsible for the strategic development of specialised paediatric services. It will work with Health Boards and within the policies and framework for children s health services set out by Ministers and NHS Scotland and in effect manage the clinical network of specialised paediatric services. The service will be delivered through a network approach and its scope will be set by the adoption of the definition in 3 above. The single service will comprise a number of speciality networks and the configuration of the service will be defined by these networks. Service models and configurations will be identified through rigorous option appraisal. In some specialty areas there may be one centre providing specialised care for the whole of Scotland, ie one network, whilst in others there may be two, three or more regional networks. In all cases there will be maximum outreach and local delivery, particularly integrating with local primary and community services for ongoing support and care to children and their families. This will require a commitment to investment in local services. The exact configuration of resources should be decided by consideration of a number of factors including : 1 describing service models, identifying the elements that really must be delivered in centre(s) and why, 5
2 looking at co-dependencies and co locations, 3 staffing particularly to cover emergency and out of hours arrangements 4 physical resources available in those centres and locally 5 taking the overview of these configurations. 6 taking a sensible view of the geography considering transportation issues, eg time, mode The model will have defined levels of care for specialist centre, DGH and primary/community care and standards of care for non-specialists and non-paediatric professionals. The defined levels of care will inform the configuration of services with the most specialised end of care for some specialties concentrated on fewer sites with systematic processes for shared care and joint assessments. National on-call rotas should be developed for other specialities where otherwise the configuration is sustainable There needs to be a national strategy for the development of networks and the opportunities to share resources to support them should be taken Activity data and outcome information are fundamental to informing this as is information on future patterns of disease. Operational models such as hospital at night and multidisciplinary emergency out of hours teams should be included. Myra Duncan Adviser National Planning Team 7 October 2004 6