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

3 NATIONAL DELIVERY PLAN - A SERVICE MODEL FOR SCOTLAND

24. The provision of specialist care involves all sections of the NHS from primary care and community services to highly specialised national centres. Many aspects of local care will be developed and provided within the wider pattern of the child health services which are planned and delivered within each NHS Board area. However, if we wish to have a secure overall framework of specialist service provision for children and young people in Scotland, there is also a requirement to take a "whole system" approach and to agree and pursue a national vision within which local and regional services can develop and thrive.

25. This Delivery Plan sets out proposals designed to foster such a vision and to support a pattern of services, and an approach to service provision, that is:

• Planned
• Sustainable
• Collaborative
• Accessible and equitable
• Focussed on quality and patient safety
• Adequately resourced

Planned Services

26. This National Delivery Plan lays out a clear aspiration for a pattern for specialist children's services that is sustainable and accessible, integrated and of high quality and well and wisely resourced. These aspirations will only be achieved by careful planning.

27. The need for effective service planning is all the more important as the numbers of children in Scotland accessing specialist services are often relatively small, particularly compared with the demands of an ageing adult population. By way of example, for every one child with diabetes there are around 80 adult patients; rheumatic diseases, very common in the adult population, affect less than 1000 children across the country.

28. As a consequence, while it remains vitally important that local services are planned within individual NHS Board areas, there is a recognised need for specialist services, and even some elements of secondary care such as general surgery, to be planned on a regional or national basis. Regional Child Health Planning Groups are already in place and there is a requirement to continue to strengthen their role to ensure that they provide an effective forum for the co-ordination and development of services within the three regions. In addition, while recognising the need for regions to be able to respond to their own priorities, there is also a requirement for the three Regional Child Health Planning Groups to work closely together to ensure a broad equity of service availability and quality across Scotland.

29. There are, however, a significant number of specialist services for children where the patient population is sufficiently small to require a national approach to service planning and, in some specialties, service commissioning. The National Services Division ( NSD) already plays a vital role through the commissioning of a range of nationally designated services ( Annex A). This includes a number of very small volume services provided elsewhere in the UK.

30. NSD also oversees the establishment and operation of national Managed Clinical Networks which are playing a key role in the integration and development of specialist children's services ( Annex B). As this service model is increasingly introduced there is a need to ensure that the pattern of individual Managed Clinical Networks is seen as part of a structured overall approach to specialist children's services - a 'network of networks'.

31. However, many elements of specialist services for children that would benefit from being organised on a national basis do not accord with the current criteria for national commissioning. Work is currently being undertaken by NHS Board Directors of Planning to bring forward proposals for revised national planning structures. Informed by this National Delivery Plan, once these revised structures have been agreed and introduced, it is intended that specialist children's services be an early priority.

We will:

Continue to support the work of the Regional Child Health Planning Groups and to encourage inter-regional collaboration where this will enhance service delivery.

Work through National Services Division to ensure that the existing and emergent pattern of nationally designated services and networks for children are taken forward as part of a 'whole-system' approach to specialist children's services.

Sustainable Services

32. The goal of high quality, safe and accessible services can never be delivered if services are vulnerable or inconsistent. One of the key priorities of service planning, particularly at a regional level, must therefore be the creation of service models that specifically and explicitly address sustainability.

33. This will involve:

• Identifying an achievable and sustainable balance between local services and specialist centres.
• Creating supportive networks, including in-reach and outreach models, supported by staffing levels that facilitate such arrangements.
• Providing appropriate training opportunities accompanied by well planned and adequately supported arrangements for the continued professional development of staff.

34. In practice much of the vulnerability in specialist children's services relates to workforce and the ability to recruit and retain staff, both for children's services in general and for specialty specific roles. Specialist services for children and young people, sometimes at a national level and frequently at a local level, are dependent on a small number of staff, or even isolated individuals, who have the necessary specialist expertise and training. That pattern involves the inherent risk that small changes in the staff profile can threaten sustainability, sometimes with little prior notice.

35. Current workforce planning, often for practical reasons, needs to address the broader generic issues across the clinical disciplines. In doing so it may not cover the very specific, but potentially critical, issues around service provision in individual paediatric specialties.

36. Within most DGH settings, and to some extent in the specialist hospitals, support for specialist services is dependent on individuals, from across the clinical disciplines, who incorporate a specialist 'interest' into a more generalist role. Such specialist 'interests' may have been developed in response to specific service needs or may reflect the individual's existing area of experience and past training.

37. Similar person and specialty-specific issues also arise in respect of University-based posts in the specialist hospitals where the special interest of the clinician significantly contributes to service provision but may not be replicated when the academic post is re-appointed.

38. Unless these and comparable issues are clearly identified and addressed, particularly where a replacement is appointed, sustainability is immediately and often unintentionally threatened. This requires a level of workforce planning, locally and regionally, that:

• Is sensitive to the specific requirements of individual specialties.
• Is informed by an obligation to maintain an agreed pattern of specialist expertise.
• Has flexibility to explore service-specific local solutions, e.g. up-skilling of existing staff, proleptic appointments, etc.
• Adopts a multi-disciplinary approach that effectively utilises the potential contribution of all staff groups, including extended roles.

39. Although particularly vulnerable to specialty-specific workforce issues, specialist children's services are also materially affected by wider generic workforce pressures.

40. Changes in medical staff training, career structures and employment arrangements are already impacting on the maintenance of viable rotas in several services, particularly in DGH paediatric units. Current predictions envisage this situation worsening in the future.

41. Given the central role played by DGH children's services in maintaining the accessibility of specialist services, as well as all aspects of secondary hospital care, early and effective solutions require to be identified and implemented. In some areas such solutions will necessarily require not just workforce solutions but also the creation of alternative sustainable service models.

42. The delivery of specialist children's services frequently takes place across NHS Board, and sometimes regional, boundaries. Workforce planning needs to take account of such service models and to operate flexibly between different NHS organisations. The ability to do this effectively requires a shared approach to employment arrangements, particularly in respect to the specialist staff from various disciplines, often with advanced training and extended roles, on whom many specialist children's services depend.

We will:

Require Regional Child Health Planning Groups to ensure that sustainability is a specific element of all service development and redesign activity in children's services.

Work with NHS Education Scotland ( NES) and other parties to develop staffing and service models that address emergent changes and pressures in medical staffing provision within children's services.

Ask the Scottish Workforce Information Standards System ( SWISS) Programme Board to take specific account of specialist children's services in the future development of SWISS.

Seek agreement on the services, staff and competencies that should routinely be available to support specialist children's services within a District General Hospital paediatric unit.

Require NHS Boards and Regional Planning Groups, in conjunction with NES, to implement workforce development plans designed to ensure sufficient nursing and AHP staff, trained to advanced practice level, are available to support redesign and development within specialist children's services.

Monitor the grading of advanced nursing and AHP roles in specialist children's services across Scotland to ensure consistency of approach.

Collaborative Services

43. Although individual specialist services, at local and regional level, have often developed independently of each other, there has been, in recent years, both a recognition and a desire for a much more integrated pattern of working.

44. The concept of the Managed Clinical Network ( MCN), introduced in the Acute Services Review in 1998, has been enthusiastically embraced within children's services such that a significant number of national and regional MCNs are already in existence ( Annex B). The importance of the MCN as a vehicle for shared good practice, service development, data-gathering and audit and user engagement has been reinforced through the consultation on the National Delivery Plan. The consequent need to utilise the Managed Clinical Network model in a wider range of specialties, locally or nationally as appropriate, is recognised and will be progressed through the existing arrangements overseen by Regional Planning Groups and National Services Division.

We will:

Support the creation of national Managed Clinical Networks in:

• Cystic fibrosis
• Rheumatology
• Endocrinology and
• Complex Needs

Request Regional Planning Groups to develop regional MCNs in line with the guidance in Delivering a Healthy Future: an Action Framework for Children and Young People's Health in Scotland (2007).

45. Although heavily dependent on the input of clinical staff and service users networking also requires appropriate managerial, administrative and data-handling support. The capacity of MCNs, and other networked models, to realise their full potential across specialist children's services is therefore dependent on the existence of an effective support infrastructure with appropriate skills and resources.

46. There is particular merit in this support infrastructure operating across the boundaries of individual MCNs since this permits skill sharing, efficiency of resource use and sustainability of input while also reinforcing the concept that each individual MCN is part of a wider cohesive approach to an overall network of specialist children's services.

47. Regional network offices are already playing an important part in supporting both national and regional Managed Clinical Networks in children's services. Investment in the management and data-handling capacity within these offices will enhance the benefits which networks offer while also encouraging the integration of individual specialist networks into an overall 'network of networks' across services for children and young people.

We will:

Support the further development of network offices based on a model of regional hubs.

Invest in additional clinical, managerial and data-handling resource to enable MCNs to realise their full potential benefits.

Explore options to improve the information technology infrastructure for networks to assist data-gathering and analysis.

48. While MCNs have offered significant advances in enhancing the equity and quality of services, they do not provide a formal structure within which the organisation and development of services can be more directly managed. The devolution of increased authority in respect of resource use and service configuration would represent a significant shift both in the level of the integration within networked services and the relationship of these networks to other NHS structures at regional and local level.

49. Support for exploring such a model of a 'Managed Service Network' was clearly expressed through the consultation process for the National Delivery Plan. The Scottish Government is committed to reviewing the potential governance and operational implications of Managed Service Networks and to bringing forward proposals for consideration.

We will:

Bring forward, in 2009, proposals for the strengthening of network service models through the creation of "Managed Service Networks".

Pilot the Managed Service Network model in children and young people's cancer services in Scotland.

50. Good communication is central to the effectiveness of networks. Although initially established to facilitate clinical referrals the Scottish Paediatric Telemedicine Service has increasingly been utilised to support networking. This involves both specialist hospitals and local services (Table 2).

Table 2 Use of Video Conferencing to support Networks

Network	MCN/ Informal Network	Use of Video Conferencing
Genital anomalies	MCN	National MCN using video conferencing for executive meetings and clinical case discussion
Renal	MCN	National MCN using video conferencing for executive meetings and clinical case discussion
Child and Adolescent Mental Health	MCN	National MCN using video conferencing for executive meetings and clinical case discussion
Cancer Services	MCN	National MCN using video conferencing for executive meetings and clinical case discussion
Gastroenterology	Informal	Bi-monthly case discussion and education with multidisciplinary team
Child Protection	MCN	Regional MCN. Video conferencing used for executive group meetings and peer review meetings
Endocrine	Informal	Weekly multidisciplinary meeting
Palliative Care	Informal	Monthly multidisciplinary meeting
Inherited Metabolic Disease	MCN	Protocols Sub-Group

51. Further investment is required to extend and enhance the telemedicine infrastructure and its pattern of working. Accordingly, through this National Delivery Plan, resources will be made available over the next three years to improve the video conferencing facilities in the specialist children's hospitals and to ensure that all units and hospitals treating children have access to appropriate telemedicine support.

52. Investment will also be made available to strengthen technical support, provide training and develop roles which facilitate clinical involvement in telemedicine-supported care. This will not only strengthen networked service models but will also directly support the delivery of clinical care and service accessibility.

We will:

Make funding available to ensure that, based on the tiered model of the Emergency Care Framework, all the hospitals and units in Scotland treating children have supported access to appropriate telemedicine facilities.

Accessible Services

53. Accessibility is a fundamental measure of service quality. While patients and parents accept the requirement to travel to access elements of specialist care they also expect that whenever it is safe and reasonable to do so, services should be available at a local level.

54. These issues are particularly important for children, especially those requiring frequent or long-term care, where a requirement to travel to access care can cause substantial disruption to family life and education as well as creating significant financial pressures.

55. The commitments in this Delivery Plan to support the sustainability of services and to encourage networking will also foster accessibility. In addition, there will be a clear expectation on Regional Child Health Planning Groups, National Services Division and emergent national planning structures that the planning of specialist children's services should include local access as a key consideration in determining service configurations.

56. In practice, the availability of local services will depend on the skill mix and strength in depth of the local team and the capacity and willingness of specialist teams to support outreached and shared models of care. A significant priority for the resources being made available through the National Delivery Plan will be investments that support these aspects of services.

57. Some areas of Scotland face significant challenges due to their remoteness. Much of the work already being done through the Remote and Rural Implementation Group to identify and equip the most appropriate and sustainable pattern of service provision in these areas will be of benefit to specialist children's services. There is also a need for individual remote and rural services to be effectively networked with specialist children's hospitals as set out in Delivering a Healthy Future.

58. Telemedicine has a key role to play in enabling service accessibility, particularly in remote and rural situations. In addition to supporting clinical decision-making it also prevents professional isolation and facilitates staff development. The strengthening and extension of the Paediatric Telemedicine Service, which will be resourced through this Delivery Plan, will specifically seek to ensure that every location providing care for children has the capacity to benefit from effective telemedicine links. In investing this resource a key priority will be the creation of effective arrangements to support local clinical decision-making wherever possible.

We will:

Work with the Scottish Centre for Telehealth and the Remote and Rural Implementation Group to invest in telemedicine services that maximise support for local care, particularly in remote settings.

59. Accessibility also requires the existence of services to access. The welcome improvement in the survival of children with life-limiting, and often complex, conditions raises specific challenges. In the past children with such conditions frequently did not survive to adulthood. As a result training and service configuration in adult medicine is not designed to meet their needs.

60. This issue is not unique to Scotland but there is an accepted need to consider how arrangements could be put in place to better provide for these specific clinical scenarios.

We will:

Establish a working group to bring forward proposals for the long-term care of children with complex and life-limiting conditions.

61. The ability to access care can also be hindered by practical issues. Even where well-structured local services exist, there will inevitably still be occasions when children, young people and their families need to travel to access specialist care. In such circumstances it is important that:

• Episodes of care are well co-ordinated to make effective use of time and minimise travel.
• Financial support is available to cover travel-related costs where necessary.
• Adequate support, including parental accommodation, is available where inpatient care is necessary.

62. A number of children and young people with complex needs and disabilities depend on a range of aids and adaptations to their home environment if they are to maintain the best possible quality of life. There is a need to ensure that the arrangements by which such support is accessed are efficient and equitable.

We will:

Ask NHS Boards to consider the economic impact on families when making decisions about the care of children and young people.

Introduce a new system of financial assistance with structural adaptations for homeowners who are disabled or have disabled children, including children and young people, with complex needs and disabilities.

63. Access is particularly important for patients and families in vulnerable or disadvantaged social circumstances. The work regarding Specialist Children's Services needs to be taken forward in ways that reflect, incorporate or are aligned with the various initiatives being undertaken by the Scottish Government and other parties to address health inequalities as described in Equally Well, the report of the Ministerial Taskforce.

High Quality Services

64. There are many aspects of the specialist services currently provided to children and young people of which patients, families and the staff themselves can be justly proud. Healthcare, and very particularly specialist healthcare, is however always advancing and there is a constant requirement to review and develop services to ensure that they represent best practice and support the best outcomes for patients.

65. Many of the elements described in other sections of this Delivery Plan will directly impact on service quality - networks which support good practice and encourage audit; investment that makes services more accessible across the country; workforce planning that supports sustainability and prevents inconsistency.

66. Other steps are also necessary if we are to consistently achieve and maintain the highest quality of service.

Training and Education

67. The equipping of staff with the knowledge and skills to do their jobs well is key to service quality. This is particularly true where specialist expertise is required. Implementing the Delivery Plan successfully will depend on a pattern of well structured training and educational programmes designed to develop new roles, enable new ways of working and ensure all staff have the opportunity to maintain and enhance their skill base.

68. NHS Education Scotland are key participants in the development of the Delivery Plan and will be active partners in its implementation with the creation of a number of programmes specifically dedicated to the specialist children's services workforce. These will include:

• The creation of Managed Educational Networks to support developments in cancer, cystic fibrosis and other specialties.
• Developing networks for Allied Health Professionals working in specialist children's services.
• Building capacity in children and young people's psychological services.
• Identifying and addressing specific training requirements for clinicians working in specialist children's services.
• Specific work on stakeholder involvement and age-appropriate care.

Outcome Measures

69. In order to monitor progress and effectively manage change, there is a clear need to be able to measure outcomes. The complexity of specialist children's services, which encompasses the whole range of clinical specialties and disciplines, makes this challenging.

70. Within individual service areas there are agreed markers of service quality, for example; life expectancy, operative mortality, prescribing practices or readmission rates. Important though these parameters are, in many cases their usefulness in service development is limited by inconsistent or incomplete data collection, a dependence on long-term outcomes or uncertainty as to the extent to which the data gathered truly measures service quality.

71. There is, therefore, a need to be able to identify, gather and analyse a number of key clinical or service outcome measures that would allow an accurate and timely understanding of progress across the spectrum of specialist children's services. Work will accordingly be undertaken with Information Services Division and NHS Quality Improvement Scotland, in collaboration with professional bodies such the Royal College of Paediatrics and Child Health, to agree additional realistic outcome measures that will support the implementation of the Delivery Plan and the longer-term development of specialist children's services.

72. It is also recognised that an additional area in which outcomes, and their analysis, are intended to be closely linked to service development and redesign is within individual Managed Clinical Networks. Audit is a fundamental precept of networked services. In support of this activity part of the investment in the infrastructure for MCNs will be targeted at strengthening the data handling and analysis capacity through regional appointments operating within the overall network support infrastructure.

Patient Safety

73. Improving patient safety is a recognised priority across many healthcare systems in the developed world. Recent years have seen a growing recognition of the significant impact that Healthcare Acquired Infection, medication errors and other adverse events have not only on individual patients but also in the resourcing and effectiveness of healthcare provision. These issues impact on specialist children's services in the same way that they affect other aspects of clinical care.

74. The NHS in Scotland is already committed to improving patient safety as reflected in the recent creation of the Scottish Patient Safety Programme and the Scottish Patient Safety Alliance. Although these initiatives have a necessary focus on the high volume of activity undertaken in the adult sector, arrangements will be put in place to ensure that specialist children's services are fully integrated into this work and that patient safety is recognised as a key driver of service change and development.

We will:

Support NHS Education Scotland to provide a range of educational and training opportunities targeted at sustaining high quality specialist services for children and young people.

Strengthen support for audit across the range of specialist Managed Clinical Networks for children.

Establish a working group involving Information Services Division, NHS Quality Improvement Scotland and relevant professional bodies to identify practical and meaningful outcome measures to support the monitoring of progress in specialist children's services.

Ensure that specialist children's services are integrated with, and benefit fully from, the Scottish Patient Safety Programme and allied activities.

Age Appropriate Services

75. The NHS in Scotland is already committed to moving the upper age limit for its children's hospital services from the 13th to the 16th birthday (with some flexibility up to 18 years). That change has been implemented in many hospitals, particularly at District General level, but will not be fully in place across the country until the new hospitals in Edinburgh and Glasgow are completed in 2013.

76. Along with the changes in age limits there is an accepted need to ensure that services and facilities for young people reflect their developmental stage in life. This issue is not exclusive to specialist services but children with complex or chronic conditions are inevitably high users of hospital services.

77. In addition to ensuring that hospital services give particular attention to the needs of young people, there is a parallel and equally important requirement that the transition of patients from children's services to care in the adult sector is well structured and patient focused. Inadequate provision for such transition can have serious consequences for the care of the young person and the management of their disease.

78. The importance of these issues is reflected in the fact that they are the subject of separate guidance which will be issued to the NHS in Scotland in the immediate future.

79. There is a specific need to ensure that all staff have access to appropriate training to enable them to interact effectively and appropriately with young people and to identify and address their particular needs. NHS Education Scotland had therefore been asked to undertake a Training Needs Analysis in regard to adolescent care. Once complete, this will inform the creation or identification of training programmes to be taken forward across all relevant clinical disciplines.

We will:

Publish separate guidance on hospital facilities for young people in Scotland.

Host a conference, in Spring 2009, to promote discussion and raise awareness regarding hospital services for young people.

Undertake, through NHS Education Scotland, a Training Needs Analysis in regard to adolescent care.

Require all NHS Boards to ensure, by 2013, that all staff routinely dealing with young people have had appropriate training.

Accommodated Services

80. Recent years have seen a significant investment in hospital facilities for children and young people. The new Royal Aberdeen Children's Hospital opened in 2004 and an improved and reconfigured paediatric unit, the Tayside Children's Hospital, was created within Ninewells Hospital in 2006.

81. In addition, there is ongoing work to enhance many of the children's units within the District General Hospitals throughout Scotland. By way of example, Crosshouse Hospital opened redeveloped facilities in 2007 and the planned new hospital in Larbert will also incorporate a paediatric unit serving the children of the Forth Valley area.

82. Beyond the above, the Government has committed to the reprovision of both the Royal Hospitals for Sick Children in Edinburgh and Glasgow (Yorkhill) within the next 5 years.

83. This major investment in new children's hospital facilities will not only create high quality environments designed to support the best of modern practice but will, for the first time, ensure that all the main inpatient units for children and young people in Scotland are located on sites which also support maternity and adult services.

84. This provides a unique opportunity to integrate specialist services across the spectrum, from the care of the mother and foetus to services for young adults. This will allow obstetric, paediatric and adult teams to work in closer collaboration than has previously been possible.

We will:

Support the provision of new children's hospitals in Glasgow and Edinburgh by 2013.

Encourage NHS Boards to ensure that full advantage is taken of the opportunities of co-location to improve services for children, young people and their families.

Resourced Services

85. The vision laid out for the future pattern of specialist children and young people's services is intentionally ambitious. The aim is to create a consistent pattern of high quality and safe services delivered in an equitable and accessible manner across the country.

86. While some of this can be achieved by redesign or redirected investment, we also recognise that there are a significant number of areas where the necessary changes require new resources to be made available.

87. The Scottish Government has therefore committed to investing £32 million over the next 3 years to support real and sustainable change. The prioritization of this major investment will be informed by the work of the Specialist Children's Services Implementation Group working under the auspices of the Children and Young People's Health Support Group.

88. The Implementation Group is charged to work closely with Regional Planning Groups, NHS Boards and National Services Division as well as NHS Education Scotland, NHS Quality Improvement Scotland and the Scottish Centre for Telehealth to ensure these additional resources produce the required changes and service developments consistently across the country.

89. Fuller details of the investment programme and the work of the Implementation Group are described elsewhere. The initial investment of £2 million for 2008/2009 has already been allocated in support of agreed early priorities. This investment is funding:

• New staff across the clinical disciplines.
• New networks in specialties such as Cystic Fibrosis and Rheumatology.
• Enhanced telemedicine facilities to support networking and education.
• Increase planning capacity to ensure further investment is used effectively.

90. It is recognised that sustained improvements will require sustained support and the Government will ensure that the necessary long-term investment will remain in place to support services on which children, young people and their families can confidently depend.

We will:

Invest £32 million over 3 years to strengthen and develop specialist children's services across Scotland.

Ensure that this additional resource is used to create sustainable change and visible improvement in the quality and accessibility of services.