Better Health, Better Care: National Delivery Plan for Children and Young People's Specialist Services in Scotland

4 NATIONAL DELIVERY PLAN - IMMEDIATE PRIORITIES

91. This Delivery Plan is designed to place the provision of specialist children's services to children and young people on a secure basis which supports a long-term pattern of service quality and consistency. Many of the initiatives are targeted at gaining medium and long-term benefit through improved planning, the creation of networks, workforce development and enhanced telemedicine links.

92. It is recognised that there are a number of services in which very early investment is required to create stability and enable rapid service improvement. Specifically these services are:

• Cancer Services
• Cystic Fibrosis
• Rheumatology
• General Surgery of Childhood
• Inherited Metabolic Disease
• Gastroenterology and
• Child and Adolescent Mental Health

Cancer Services

93. An extensive review of cancer services for children in Scotland was undertaken as part of the Delivery Plan review process. This work was in turn informed by the earlier report of the Children's Cancer Services in Scotland Working Group and the Guidance produced by the National Institute for Health and Clinical Excellence in 2005. This guidance described a tiered and integrated model of cancer services with specialist centres developing shared patterns of care with appropriately resourced local hospitals and units. Within such a model local care can be supported whenever possible while effective provision is made to access a specialist centre when required.

94. Application of this guidance is being taken forward by the recently established National Managed Clinical Network for Children and Young People's Cancer Services which commenced in 2007.

We will:

Support the continued development of the Managed Clinical Network for children and young people's cancer services and pilot the creation of a Managed Service Network.

Resource the children's cancer services in Glasgow and Edinburgh to provide the full range of specialist cancer care and to effectively support local shared care services in other centres.

Invest in Aberdeen, Dundee and agreed District General Hospitals to support their effective participation in shared care services in ways that reflect local demand and service configuration and maximise clinically appropriate opportunities for local care.

Maintain and continue to develop the national children's bone marrow transplantation service in Glasgow.

Cystic Fibrosis

95. There is acknowledged variability in the quality and accessibility of Cystic Fibrosis services for children across Scotland. Key determinants of outcome such as annual review and newer treatment options are inconsistently available and there is concern that long-term survival in Scotland does not match that of the best performing countries.

96. Much work has already been undertaken to identify the pattern of investment required, particularly in nursing and AHP staff, in order to bring services up to a uniformly high standard that accords with best practice. The immediate need is to develop a Managed Clinical Network, at a national level but with strong regional emphasis, which can foster equity of service across Scotland and inform the necessary further investment in service development.

We will:

Create a national Managed Clinical Network for Cystic Fibrosis in children.

Informed by the MCN, ensure a pattern of investment in Cystic Fibrosis services for children that supports agreed best practice.

Rheumatology

97. Although there is good evidence that early diagnosis, tight disease control and emerging treatments can prevent children with rheumatic conditions progressing to joint damage and disability, investment in these services has lagged behind other areas of the UK.

98. The specialist workforce is currently very small across all the involved disciplines with consultant medical input often depending on general paediatricians or adult rheumatology specialists with little direct training in paediatric rheumatology.

99. There is an agreed immediate need for an additional consultant post to support services across Scotland and for the creation of an MCN to take forward service developments.

We will:

Invest in an additional consultant post in Paediatric Rheumatology. Although based in the central belt this post will facilitate the support of networked services across the country.

Create a national Managed Clinical Network for Paediatric Rheumatology.

Support further developments to ensure equity of care across Scotland.

General Surgery of Childhood

100. Although specialist surgical procedures in children are chiefly undertaken in the main children's hospitals, surgery for more routine conditions has usually been performed in the District General Hospital, thereby maintaining local access.

101. Changes in surgical training and loss, through retirement, of senior general surgeons with paediatric experience, are increasingly threatening this pattern. In the absence of intervention the current trend could require many more children to travel to specialist hospitals for technically straightforward and low risk procedures.

102. Links are increasingly being created between the specialist centres and their regional District General Hospitals with a view to strengthening local surgical care. These arrangements require to be adequately resourced through the appointment of surgeons trained in the general surgery of childhood who have a regional remit to support local services.

103. There is a need for agreed pathways of care that bring consistency and clarity, particularly in emergency situations, regarding the respective roles of the local and specialist hospitals.

104. It is recognised that the delivery of good surgical services for children in a District General Hospital is greatly strengthened where there is a close working relationship between surgical staff and the in-house paediatric medical services. The maintenance of local surgical services will be dependent on the existence of such a whole team approach to this patient group.

We will:

Invest in additional consultant posts, working at a regional level, to support local general surgical services for children.

Publish care pathways to ensure the safe, consistent management of common surgical conditions.

Encourage effective collaboration between paediatric medical and surgical services within local hospitals.

Inherited Metabolic Diseases

105. Inherited Metabolic Diseases incorporate a complex range of specific, and sometimes very rare, inborn errors of metabolism. In a number of these the condition can have severe and life-limiting consequences, particularly where diagnosis is not made early and accurately.

106. There have been significant problems in the consultant and AHP staff profile in the services which has hindered equitable service delivery and threatened service continuity. The creation of a Managed Clinical Network (2007) and recent agreements regarding consultant appointments, have helped to stabilise service provision but there is a continuing need for further investment to ensure longer-term service stability and equity of quality and access.

We will:

Invest in additional medical and AHP staff to safeguard service provision in Inherited Metabolic Diseases.

Explore the potential contribution of extended roles (for example consultant dieticians) within Inherited Metabolic Disease services.

Gastroenterology

107. Paediatric Gastroenterology, Hepatology and Nutrition ( PGHN) services are coming under increasing pressure in Scotland. This is due to recognised gaps in staffing and service provision; a reduction in the involvement of adult clinicians in the care of children and a significant and ongoing rise in the incidence of inflammatory bowel disease in children and young people. The impact of this latter issue is magnified by the progressive introduction of the raised age limit for children's services.

108. These issues were recognised in an earlier review of Tertiary Paediatric Services in 2004 and the present consultation exercise has drawn specific attention to the urgency with which some elements of service provision in Scotland require to be addressed.

We will:

Invest in an additional consultant post in PGHN to support services in the South East and Tayside Region.

Provide support to strengthen the paediatric gastroenterology network in the North Region.

Work with Regional Planning Groups to ensure appropriate investment in PGHN services across Scotland during 2009-2011.

Child and Adolescent Mental Health Services

109. A number of respondents raised issues about the delivery of Child and Adolescent Mental Health Services ( CAMHS) and the potential to include funding for these services through the specialist children's services' workstream. The importance of psychological support for children and young people with serious or long-term conditions was also emphasised during the consultation exercise.

We will:

Make available additional funding during 2009 to 2011 to support the development of Child and Adolescent Mental Health Services.

Work with NHS Boards to improve the availability and accessibility of CAMH services.

Ensure that when investing in specialist children's services psychological support is recognised as a key component in the care of children and young people with serious or long-term conditions.