Scottish Government

SECTION ONE - THE BASIS FOR CHANGE.

WHY CHILDREN AND YOUNG PEOPLE ARE DIFFERENT

13. At the heart of the development of the Action Framework is the precept that within a healthcare system inevitably challenged by adult health needs, particularly in the context of an aging population, specific and conscious attention has to be given to ensure that the very different health needs and requirements of children and young people are appropriately prioritised and addressed.

14. In the Report of the Public Health Inquiry into Children's Heart Surgery at the Bristol Royal Infirmary (2001), which was prompted by concerns regarding surgical mortality but which embraced the much wider dimension of the provision of healthcare services to children, Prof. Ian Kennedy observed:

"It seems so obvious it hardly needs to be said: just as children differ from adults in terms of their physiological, psychological, intellectual and emotional development so they differ in their healthcare needs"²⁰

15. In practice the health and healthcare needs of children and young people are significantly different from those of their adult counterparts in several distinct and important ways.

Patterns of Ill Health

16. Children are high users of primary care for minor illnesses, surveillance and immunisations. This fact needs to be reflected in the provision of routine and out-of-hours primary care services, as well as in the training, experience and specialisation of staff and the nature of the facilities provided.

17. Correspondingly serious or life threatening illness in childhood is relatively uncommon. While that pattern is clearly welcome it is equally the source of a range of other challenges, many of which relate to the sustainability of accessible local or regional services, a situation which is made more complex by the challenges of rurality and distance that apply in Scotland.

18. These issues impact across the range of secondary and tertiary services but are particularly explicit in respect of low volume specialities many of which currently face very real difficulties in areas such as workforce, training, skill maintenance and the distribution of specialist facilities.

19. Many of these challenges are drivers towards a centralisation of children's services both regionally and nationally. However this runs directly counter to the fact that children are also a patient group for whom local access, a key priority in Delivering for Health, is particularly important.

20. Gender impacts in specific ways on the health of children and young people. As well as differences between the sexes in the prevalence of a number of diseases of childhood, particularly those with a genetic origin, there are also gender differences in terms of health related behaviours and attitudes as seen in the incidence of accidental injury and suicide in young men and the current patterns of increased incidence of smoking and alcohol consumption in the female population.

21. Childhood illness and health service use are also affected by ethnic background, a factor that needs to be understood and embraced in an increasingly culturally diverse Scotland. Certain diseases (for example haemoglobinopathies, diabetes) are more prevalent in some ethnic minority communities and language barriers and social exclusion can also materially affect the provision of care.

The Need for Child Orientated, Age Appropriate, Family Centred Services

22. Physically, emotionally and socially children are not small adults. Nor are children themselves a homogeneous group given the major changes that take place from infancy to adolescence. As a result there is a constant requirement to ensure that the health services and facilities provided for children, and the skills of the staff of all disciplines contributing to their care, are specifically tailored to the needs of children and young people at the various stages of their development. All too often in the past children and, very particularly, young people have been required to accept healthcare based on models of service designed primarily for an adult population.

23. Childhood constitutes the formative years of life in which education, home life and social interaction shape the future adult. Significant interruption to such input can disrupt learning and erode a child's social structures to the detriment of their development. It is therefore vital that healthcare is consciously structured to minimise such disruption wherever possible and to ensure that educational, emotional and social needs are addressed particularly when prolonged hospitalisation is unavoidable.

24. Children and young people are also normally heavily dependent on the continuing support and care of their families, as well as the health and resilience of their parents, and the illness of a child can, in its turn, have major implications for family life. Addressing the needs, anxieties and expectations of parents has to be an integral part of caring for the child. Equally the provision and configuration of services and facilities needs to explicitly recognise and support the vital role played by parents and carers and to address the wider needs of the family. Such provision also requires to be responsive to the needs of young carers who may find themselves as the primary support for a sibling or an ill or disabled parent.

25. The dependence of children and the responsibilities of parents are reflected in their specific legal protections and rights. Staff need to understand these issues and their implications for the provision of healthcare and health services, both individually and collectively.

The Need for Protection and Advocacy

26. Healthcare provision reflects wider, external social structures and the power differentials between adults and children. That reality, and the vulnerability of children and their limited capacity to make their voices heard, places a particular responsibility on the whole community to ensure that they have the protection, attention and priority which they deserve.

27. Child Protection has been identified as a key issue for health and other agencies following a series of high level inquiries in Scotland and elsewhere in the UK. These inquiries have consistently reinforced the message that the protection of children and young people is "everyone's job" ²¹. This in turn needs to be reflected in integrated working practices, adequate training, heightened awareness and effective communication , which may involve sharing information with other services when necessary, including with services for adults, to ensure that the safety of children is given highest priority. It is essential that this happens across the full range of professionals in a position to identify these issues to make sure children get the help they need when they need it and in order to minimise the risk of future tragedies.

28. In terms of the overall provision of healthcare it is inevitably true that the burden of adult ill-health creates enormous challenges for the resourcing, design and efficiency of the health service which, in turn, demand prioritisation, targeting and attention at all levels. In this environment the needs of children and young people for healthcare provision and resources to address their different and specific needs can easily be over-looked.

29. The fact that children and young people do not place the same pressures of demand and volume on the health service, particularly the hospital sector, should not constitute a basis for a failure to give due attention and priority to the challenge of providing age appropriate, equitably accessible and high quality care to children and young people.

30. For many children in Scotland it also remains true that their vulnerability and need for advocacy are exacerbated by environments and circumstances characterised by deprivation and social exclusion ²². These issues affect all age groups, however their impact on the well-being of children is often particularly profound, frequently less visible and potentially life long.

31. Young people who are vulnerable, excluded or in the most impoverished groups still experience many of the poorest health outcomes and greatest threats to their health and well-being. Looked after children and young people and those leaving care, homeless young people, travellers and young offenders are all at significantly increased risk. These young people have the highest rates of severe chronic illness, the poorest diets and are the heaviest consumers of tobacco, alcohol and illicit drugs.

32. The need to address the causes and consequences of social deprivation and poverty is a matter of national concern and focus. It is however of particular importance to the children growing up in such circumstances who are currently faced with starkly different prospects for their future health and well-being and patterns of life-expectancy than their more affluent counterparts (see Fig 1).

33. A wide range of healthcare professionals and others, including early years workers, teachers and social workers, are involved in the provision of universal and targeted services to these children and to their families. It is vital that all professional groups working with children and families in these circumstances have a broad understanding of the contribution which others can make to addressing these adversities, and that effective and appropriate links are made between different professionals in individual cases.

Fig 1 Increasing gap in male life expectancy

The Opportunity to Influence Long Term Health

34. Although there have been undoubted improvements in a number of areas the health of the adult population in Scotland continues to give rise to serious concern, not least when comparison is made with our European counterparts and other countries in the developed world. The mortality rates for conditions such as ischaemic heart disease and cancer continue to place us in the worst 4 or 5 countries in Europe and overall Scotland is only now achieving levels of life expectancy seen in the best performing European countries over 30 years ago. In addition to the impact that our pattern of adult ill-health has on individuals and their families, the associated social and financial burden is enormous.

35. While life style choices and life circumstances in adulthood undoubtedly play their part in our poor health record it is equally, and ultimately more importantly, true that many of the conditions that contribute to our burden of adult ill-health have their origin, in part or in whole, in the physical and mental health of our children and young people and in the health behaviours and attitudes which they adopt and frequently retain.

36. Within this truth lies a vital opportunity since efforts to promote the health and improve the health-related behaviours and attitudes of our children and young people have the potential to have a generational step-change effect on our national health. Equally, a failure in this area, as reflected in the evolving and very concerning pattern of childhood obesity ²³, carries serious implications not only for the future health of our population but also for the capacity of the health services to address need and demand.

37. Securing the future health of our nation therefore requires a concentrated and effective commitment, across all agencies and sectors of our society, to ensure the health and well-being of our children and young people thereby delivering the healthy future to which Scotland rightly aspires. This requires multi-agency cooperation and joint working to plan, design, commission and deliver high quality integrated services for all children, regardless of their backgrounds or circumstances and to ensure that their needs are identified and assessed as soon as possible with clear, effective and agreed plans being put in place to address these needs.

38. The following chapter describes how the policy context has developed in Scotland and the steps that have been taken to address the challenges we face in improving the health of children and young people in Scotland.

THE NATIONAL POLICY CONTEXT FOR CHILDREN AND YOUNG PEOPLE IN SCOTLAND

39. The approach in Scotland is firmly based on the United Nations ( UN) Convention on the Rights of the Child (Article 24) which requires countries to:

"recognise the right of the child to the enjoyment of the highest attainable standard of health and to facilities for the treatment of illness and rehabilitation of health"

and to

"strive to ensure that no child is deprived of the right of access to such health care services."

40. The UN Convention was ratified by the UK in 1991 and subsequently adopted in Scotland as central to policy development. It is reflected in Scottish legislation and Scottish Executive policy priorities for children and young people and informs the high-level vision for children and young people agreed by Scottish Ministers:

"… In order to become successful learners, confident individuals, effective contributors, and responsible citizens, all Scotland's children need to be safe, nurtured, active, healthy, achieving, included, respected and responsible."

41. In making children and young people a priority the Scottish Executive have established a top level Cabinet Delivery Group to ensure the aspirations and needs of our children and young people are being met. This Group is driving forward a challenging agenda to deliver the vision and improving outcomes through improving delivery, integrated assessment and information sharing, quality improvement and joint inspection and workforce development - an agenda, in which the health service has a key role to play. Formal guidance on the development of Integrated Children's Service Plans has been set out by the Scottish Executive to assist the local planning and development of all services relevant to children and young people.

42. The priority given to children and young people is reflected in the Scottish Executive's commitment to addressing health inequalities, the social justice agenda and the emphasis on health improvement to improve health outcomes not only for children and young people but the wider community in general. This approach features in the key documents and policy initiatives listed below:

• For Scotland's Children -Better Integrated Children's Services (2001)
• Improving Health in Scotland - the Challenge (2003)
• Closing the Opportunity Gap (2003)
• Scotland's Commissioner for Children and Young People (2004)
• Guidance on Integrated Children's Service Plans (2004)
• Building a Better Scotland (2004)
• Ambitious, Excellent Schools (2004)
• Delivering for Health (2005)
• Getting it Right for Every Child (2005)
• Changing Lives - The report of the 21st Century Social Work Review (2006)

Child Protection

43. The Scottish Executive has also identified child protection as a major area requiring action and published Protecting Children and Young People: The Charter (2004) which outlines the needs and expectations of children and young people in relation to their protection from harm by another person. The complementary publication Protecting Children and Young People: Framework for Standards (2004) was aimed at all staff and agencies involved in the protection of children, both directly and indirectly (i.e. Local Authorities, Police Services, Health Boards, Children's Reporters and agencies in the voluntary sector) and informs the development of child protection services. Beyond that agencies and professionals should be able to demonstrate that standards are being met through Integrated Children Service's Plans.

44. While the formal reform programme is already well developed, it is clear that there is still much to be done to embed the necessary practice within and across all agencies and professionals working with children to ensure they work together effectively in the best interests of the child. We have not revisited this topic specifically within the Action Framework, however, many of the actions in this document support the child protection agenda.

Health Improvement

45. As we have already noted, other agencies, in addition to healthcare providers, have a key contribution to make to the early establishment of healthy lifestyles and behaviour in childhood, which can set the pattern for lifelong behaviours and thus impact significantly on Scotland's health. Education has a key role to play in promoting health and healthy lifestyles. Almost all of Scotland's 3 and 4 year old children now attend free, part-time pre-school provision, where "physical development and movement" is one of the 5 key aspects of learning identified within the Curriculum Framework for Children 3 to 5.

46. The guidance to staff in this sector emphasises that children should be helped to develop "the skills required to take care of their own bodies" and cites as examples, washing, cleaning teeth and "the feeling of well-being that good health and physical play bring".

47. For older children the 5-14 National Guidelines on Health Education ensures that health education is part of a comprehensive programme of personal & social education. This approach is designed to ensure that information is given, not in isolation, but as part of a programme aimed at helping young people to develop sound lifestyle choices and healthy living.

48. All schools are required to be health promoting by 2007. The Scottish Health Promoting Schools Unit was established to support schools in reaching this target and to promote a whole school approach to the physical, social, spiritual, mental and emotional well-being of all pupils and staff. This ensures not only that health education is integral to the curriculum but also that school ethos, policies, services and extra-curricular activities foster mental, physical and social well-being and healthy development.

49. Schools also offer an important opportunity to influence dietary intake and attitude. Hungry for Success is a whole school approach to school meals which sets out nutrient standards for school meals but also encourages a focus on healthy eating across the curriculum in order to help young people make healthy eating choices throughout their lives.

Social Justice and Inclusion

50. Many of these ambitions are also reflected in Closing the Opportunity Gap and in Building a Better Scotland (2004) which expresses a commitment to give every child and young person in Scotland the best possible start in life through investment in:

• early intervention and school meals to support the development of a healthy Scotland;
• increased childcare to widen access for parents to employment and training opportunities;
• youth justice, including tackling persistent young offenders, to help create a safer and fairer Scotland;
• children and young people with special educational needs and disability to improve their life chances and help build a caring Scotland; and
• the educational attainment of looked after children with support when they leave care in order to close the opportunity gap for this disadvantaged group.

51. Accordingly while this Action Framework specifically addresses issues relating to the physical, mental and emotional health of children and young people it does so in the context of a shared commitment across many professional groups, to children's overall well-being within a society that gives them due care, support, opportunity and significance.

The Support Group

52. In response to similar commitments in England and Wales the respective Departments of Health have developed National Service Frameworks for Children's, Young People's and Maternity Services. Although not identical in approach these Frameworks have sought to capture the key standards and actions required for the provision of consistent, accessible and age-appropriate high quality healthcare to children and young people.

53. A different approach has been adopted in Scotland. In 2000 the Child Health Support Group ( CHSG) ²⁴ was established as a Ministerial Advisory Group chaired by Malcolm Wright (Chief Executive, NHS Education Scotland) and Lead Commissioners for Child Health were identified in each Health Board area. In addition A Framework for Maternity Services and the Report of the Expert Group on Acute Maternity Services Report were published in 2001 and 2002 respectively.

54. Under the auspices of the CHSG a range of work was undertaken to review, progress and make recommendations about health services for children and young people including:

• CHSG visits to all Scottish Health Boards to review existing service provision
• Production of a National Template for Child Health Services
• A review (on-going) and specific recommendations on the provision of Specialist Children's Services
• Production of Guidance on the Implementation of Health for All Children (Hall4).
• Appointment of a National Clinical Lead for Children and Young People's Health
• Production of advice on Psychiatric Inpatient Provision in Scotland for Children and Young People
• Development of Children and Young People's Mental Health: A Framework for Promotion, Prevention and Care
• Development of a Emergency Care Framework for Children and Young People in Scotland

55. These reports clearly identified unfinished business and in response the Scottish Executive has widened the role and remit of the CHSG by establishing a Children and Young People's Health Support Group ²⁵. The main focus of the group is on delivery with the following key areas of work identified:

• Engagement with Health Boards, Regional Planning Groups and the Scottish Executive to ensure that NHS Scotland adequately reflects the needs of children and young people's health
• 'Deliver measurable improvements in the provision of healthcare, health improvement and health outcomes for children and young people in Scotland'
• Mechanisms for children, young people and their families and partner agencies to participate in planning and development of services
• Development of an educational framework in association with NHS Education Scotland to ensure we have a child health workforce fit for the 21st century.

56. And specific service areas including reviews of :

• general surgery for children and young people
• specialist paediatric services in Scotland
• age appropriate care
• high dependency care for children and young people in collaboration with National Services Division.

57. Concurrent with much of this work the Scottish Executive commissioned Prof. David Kerr to undertake an in-depth review of the future challenges and direction of the NHS in Scotland. The CHSG, along with others, had opportunity to contribute to this process and to ensure that key issues pertinent to children and young people's health were reflected in several sections of the final report, Building a Health Service Fit for the Future, which was published in May 2005. The Scottish Executive response, Delivering for Health which was released in October 2005, intimated a clear commitment to address the issues raised and includes a number of specific recommendations impacting on child health which are incorporated into this Framework.

The Action Framework

58. In Delivering for Health, the Minister for Health and Community Care reaffirmed his commitment, initially expressed in 2004, to the development of an ' Action Framework for Children and Young People's Health in Scotland' designed to bring together in a single, focussed and accessible format the principal challenges facing the provision of children and young people's health services and the actions required from healthcare providers and others to address them.

59. The Framework cannot capture every recommendation emerging from the many strands of work that have been undertaken but provides those who commission and provide services which impact on child health with clear guidance regarding those actions and service developments which offer the best, most realistic and most immediate opportunities for delivering real change and improvement. This includes not only NHS organisations at national, regional and local level but also Local Authorities and other bodies. Inevitably different areas of Scotland are at different stages of development but the Framework will allow the flexibility for key actions to be prioritised according to local circumstance.

60. Central to this process is the inclusion of progress measures for each of the areas of activity. These progress measures are intended to express the principal outcomes in the form of realistic and measurable goals that will serve as markers of progress in taking forward the child health agenda.

61. The Framework is designed to be a practical user-friendly document that identifies objectives and actions which providers can realistically be expected to incorporate into their planning during the next 3-5 year period. The same approach will also allow the Framework to act as a self-assessment and performance management tool to allow all stakeholders to assess what progress is being made over the lifetime of the document.

62. In setting out a clear agenda for children and young people's health the Action Framework represents a further step forward in Scotland's commitment to fulfil the highest aspirations for its children and young people.

HEALTH SERVICES FIT FOR CHILDREN AND YOUNG PEOPLE

63. The National Framework for Service Change in the NHS in Scotland, Building a Health Service Fit for the Future, eloquently articulated the drivers for change and the challenges facing the NHS in Scotland and identified key issues that require to be addressed in order to provide a health service that is "better, quicker, closer and safer". The Scottish Executive's response to this report, Delivering for Health, highlighted how these challenges would be addressed for children and young people.

64. While most of the issues and challenges emphasised in these documents will have an impact across the whole of healthcare provision, many have specific and different implications for the provision of healthcare for children and young people. These differing implications, which must be clearly identified and understood if they are to inform the actions and priorities of healthcare providers, are set out under the following headings:

• Promoting health and well being
• Balancing access, quality and sustainability
• Developing the workforce
• Reflecting patient focus
• Ensuring performance management and quality assurance
• Information technology

Promoting Health and Well Being

65. There is a clear understanding that much of the burden of ill health that affects the Scottish population arises as a result of conditions that are either caused, or substantially influenced, by socio-economic status, poverty and lifestyle choices. Dietary habits, activity levels and cigarette smoking, alone or in combination, play a major role in the aetiology of conditions such as cardiovascular disease, stroke, diabetes, chronic respiratory disease, osteoporosis and several forms of cancer. Added to this are a range of health problems that directly or indirectly arise as a result of alcohol or substance misuse.

66. Much emphasis is placed on educating and advising the adult population regarding those activities and behaviours that either promote or damage health but in practice the origins of many of these conditions can be traced back to childhood, infancy and even maternal behaviour and well-being during pregnancy.

67. One very pressing example of this is the pattern of increased weight and overt obesity now found in childhood with 34% of children aged 13-15 yrs being deemed overweight. Unchecked, the impact this will have not only on each individual affected but on our national health and our national health services is potentially enormous.

68. The true promotion of health and well-being within a population requires a sustained and concerted effort to foster the health of children from, and even before, birth. This objective, which needs to be firmly embedded in the ethos, planning and delivery of the NHS in Scotland, involves all the agencies that directly influence the health choices, health outcomes, life experience, behaviours and attitudes of children as well as those that shape the economic, physical, social and cultural environment in which children and young people develop. To that end the development of Integrated Children's Service Plans provides an opportunity for healthcare providers to engage with other local planning partners, including the voluntary sector, and with children and families, to agree and implement a shared agenda of action to improve the quality and integration of local services and to influence child health and well-being.

69. In parallel there is a need to ensure parents and carers are fully informed, equipped and supported for their pivotal role in shaping, and even irrevocably determining, the long-term health and well being of their children. Parents' ability to take on this role will, in turn, be affected by their own health, resilience and levels of support. Health professionals, early years workers, social workers and other professional groups will all have a contribution to make to helping parents promote healthy habits and behaviours in their children.

Balancing Access, Quality and Sustainability

70. The delivery of healthcare services to children and young people, particularly those involving hospital-based care, is particularly vulnerable to the competing demands of local accessibility and maintenance of service quality. This poses very real challenges in many areas of acute child healthcare practice where sustaining high standards and adequacy of workforce and facilities is often most easily achieved by centralising services on a regional or even national basis.

71. This applies not only to highly specialised services but also to elements of secondary care, for example general surgery, which are readily sustained at District General Hospital level for the adult population but, because of smaller activity levels and the limited availability of paediatric trained staff, are already seriously threatened for children's services. The last decade in Scotland has seen the loss of many such local services with children having to travel to the main city hospitals for straightforward interventions.

72. Conversely however access is of particular importance in healthcare provision for children and young people. Where healthcare cannot be delivered locally attendance at a geographically distant hospital can be distressing for the child, involve substantial disruption for the parents, carers and other family members and can additionally raise issues of loss of schooling, financial pressures, time off work for parents etc.

73. These issues become much more acute if frequent attendance or prolonged hospitalisation is necessary. While some centralisation is inevitable - and is usually accepted by families when associated with specific interventions of a major nature - the need to deliver as much care as locally as possible is of particular significance in designing health services for children and young people.

74. This situation can only be addressed by the existence of a robust and well organised planning framework working in a collaborative manner at regional, inter-regional and national level accompanied by the managed, structured and imaginative use of network models to deliver specialist advice and expertise to centres outwith the main urban areas.

75. At a local level there is also an imperative to ensure that the planning and provision of health services for children and young people is fully integrated with the interrelated services provided by other agencies, principally through Local Authorities ²⁶.

Developing the Workforce

76. As services are developed in a more integrated way the requirement for a workforce that has the necessary core skills and competencies to deal with a wide range of issues impacting on children is increasingly apparent. In addition to health this process needs to recognise the specialist roles that exist in education and social work. While this document concentrates on the issues affecting the health sector the increasing impact of such joint working on workforce and training issues will need to be addressed.

77. Changing Lives²⁷, the report of The 21st Century Social Work Review has established a clear agenda for social work reform, including building workforce capacity and increasing professional autonomy within a strong framework of professional accountability. A similar review of the early years and childcare workforce has been completed, and there is increasing interest in exploring and exploiting potential synergies in the qualification and training opportunities available to different professional groups, with a view to increasing mutual understanding in the context of increased joint working to improve children's health.

78. In NHS Scotland it is now widely accepted that staff across all healthcare disciplines - nursing, medical, Allied Health Professionals ( AHPs) - who care for children and young people need to be competent not only in their particular area of clinical practice but also in the specific requirements inherent in dealing with young patients and their families. Inevitably this impacts very substantially on recruitment opportunities which are further constrained when sub-speciality experience is additionally required.

79. Specific instances of these problems are numerous, for example neonatal nursing, tertiary specialist consultants and a range of AHP disciplines specialising in paediatric practice. These workforce needs require to be explicitly identified and understood separately from the wider workforce challenges of the NHS since in many cases they may demand very targeted solutions. One current example is the well documented need to strengthen the orthoptic workforce to implement screening recommendations in Health for All Children against the backdrop of there being no training provision for this speciality in Scotland.

80. The Scottish Executive Health Department published the National Workforce Planning Framework 2005²⁸ in August 2005 . The first round of regional workforce plans were received in January 2006. Board Workforce Plans are due by the end of April 2006 and the next round of regional workforce plans by the end of September 2006. Delivering for Health includes specific actions in relation to the child health workforce which reinforces this approach.

81. The Royal College of Paediatrics and Child Health have projected that the medical consultant workforce should increase from 188 posts currently to 300 WTE by 2013. This projection for medical staffing will need to be considered locally, regionally and nationally as part of the workforce planning process and set in the context of the overall proposals for consultant workforce expansion in Scotland. It will also need to take into account the development of new models of care and multi-disciplinary working as well as the impact of training and service delivery of Modernising Medical Careers and working time regulations.

82. A Scottish Nursing and Midwifery Workload and Workforce Planning Project is underway and a Paediatric and Neonatal Nursing Sub Group of the Expert Advisory Group has been established to develop, pilot and assist in the implementation of workforce planning tools for this staff group. Recommendations are included in this document for moving this critical agenda forward. Work on the Allied Health Professionals workload planning has also begun and the outcome will be included in the Action Framework.

83. In addition, a strategic review of the Child and Adolescent Mental Health workforce Getting the Right Workforce- Getting the Workforce Right²⁹ has recently been published by the Scottish Executive. This review has also identified that the specialist mental health workforce in Scotland is less than half the size needed to deliver the expectations of The Mental Health of Children and Young People: A Framework for Promotion, Prevention and Care. These issues present a major challenge for the future organisation of children and young people's healthcare in Scotland and will have to be met by a significant redesign of health and other services as well as sufficient investment in new AHPs, psychological, medical and nursing posts.

84. In addition to the specific training requirements associated with addressing the above workforce issues it is also recognised that a much wider range of staff across the clinical disciplines are required to provide some level of care to children and young people, sometimes in emergency situations. This issue is particularly prescient in the more rural parts of the country but is relevant even in urban areas, particularly in Primary Care.

85. There is an urgent need to ensure that staff in such situations are adequately supported by the provision of appropriate training packages that address key clinical skills unique to the care of younger patients e.g. child protection issues, recognition of the sick child, consent to medical treatment etc.

86. It is important that existing models of care are re-examined and new ways of working including role development and multi professional agency working are considered as the way forward. This will include revisiting medical models of care and developing opportunities for staff other than medical staff to lead on service issues.

Reflecting Patient Focus - Age Appropriate Services and Advocacy

87. The physical, social, emotional and cultural needs of children and young people differ materially from their adult counterparts and vary across the age spectrum from birth to the late teens. The National Services Frameworks in England ³⁰ and Wales ³¹ have emphasised the importance of providing care in "age-appropriate environments" and this requirement is reiterated in Building a Health Service Fit for the Future and Delivering for Health.

88. The Children (Scotland) Act 1995 defines a child as a person under the age of 18 years which is broadly in line with definitions used, for example, by WHO, UNICEF and the Convention for the Rights of the Child. In practice however, although there is some local variation, paediatric facilities in Scotland have traditionally focused on children under 13-14 years of age which is at variance with England, North America, Australia and much of Europe where children's hospitals admit patients up to 16 years of age or older.

89. The recommendation in Building a Health Service Fit for the Future that the age limit in Scotland be moved to 16 years with additional flexibility and choice for patients aged 16-18 years is very welcome. Additionally the Mental Health (Scotland) Act places a legal obligation on NHS Boards to make specific provision for young people under the age of 18 who require hospital treatment for mental health problems.

90. It is, however, recognised that the successful introduction of this transition will not only require a shift of patient activity from the adult to the paediatric sector but should also prompt the development of services that are specifically designed to address the particular needs of adolescent patients, a group which has largely been overlooked in health service design and planning in the past.

91. Concurrent with the requirement for the provision of age-appropriate services is the need to ensure that the transition stage from paediatric to adult care, which inevitably takes place during the care of young people with long-term conditions, is undertaken in a structured, consistent and well-understood manner which is fully centred on the patient's needs. For young people with complex needs the transition needs to be effectively managed in partnership with education and social work services, with a clear focus on delivering desired outcomes for the young person.

92. Building a Health Service Fit for the Future further emphasises the need to give patients and the public a voice within the NHS and to ensure their increased engagement in the development of health services in the future. Young patients have a right to have their opinion taken into account on issues that affect them, as outlined in Article 12 of the UNCRC. The application of these principles in the context of services for children and young people requires the identification of effective mechanisms to ensure the active involvement not only of parents and carers but of the children and young people themselves.

Ensuring Performance Management and Quality Assurance

93. The Scottish Executive Health Department produced guidance in 2005 which sets out key objectives, targets and performance measures for health and local delivery plans for NHS Boards. The four objectives relate to Health, Efficiency, Access and Treatment ( HEAT) which are supported by 28 key targets, 32 key performance measures and 20 supporting measures. We have incorporated the HEAT approach in this Action Framework where relevant. Although not all of the indicators developed for children and young people since 1999 have been included in HEAT there is an expectation that NHS Board performance will still be assessed using these outcome measures. This is highlighted by the health improvement issues identified earlier in this document and the need to use indicators that are particularly sensitive to the needs of children and young people.

94. Some services particularly relevant to children and young people, for example therapy services provided in the community and child and adolescent mental health services, have not featured in formal performance management arrangements for the NHS. These are areas that have given cause for concern especially when taken in the context of targets that have been set on the basis of providing integrated services for children and young people with education, social work and other services. This is also seen when there is a statutory basis for providing care, for example Additional Support for Learning (Scotland) Act and the Children's Hearing review process. The Scottish Executive is developing child sensitive performance indicators through an integrated Quality Improvement Framework which will be launched early in 2006.

95. Although waiting times targets have largely focussed on adult services many of the generic targets are applicable in a child health setting. However as waiting time targets continue to reduce then more children's services will require action to meet them for example routine radiological investigations within 9 weeks by 2007, surgical treatment for scoliosis and cardiac interventions which are currently outwith national guarantees.

96. Another major issue raised in relation to performance management has been the implementation of guidance and specific service frameworks designed to ensure that the quality of services is improved or maintained. In England the implementation of the Children's National Service Framework has been incorporated into the inspection process led by the Healthcare Commission. Alternative but equally robust measures are in place in support of the National Services Framework in Wales. We are proposing a comparable approach to support the implementation of this Action Framework with appropriate self-assessment and review processes taking account of the current joint inspection regime developed for child protection services which will be expanded to wider children's services ³²

97. Standard setting is a key part of quality assurance. Subsequent to the Acute Services Review (1997) ³³, with its recommendations for improving the quality assurance of Scotland's health services, substantial effort has been devoted to the generation and monitoring of standards for clinical services. In recent years this important work has been substantially progressed through NHS Quality Improvement Scotland with a wide spectrum of clinical services now being covered.

98. Clearly services provided to children and young people are equally dependent on good quality assurance methodology however there are many determinants of high quality care in paediatric practice that are materially and validly different from the adult sector rendering cross-referencing to adult based standards inappropriate and potentially misleading. Thus far the development of standards more specifically focusing on child health services has been limited, however NHSQIS have now begun work in this area and completed a scoping exercise in 2005 ³⁴.

99. As well as clinical standards and quality assurance systems, services will have to address equality and diversity issues in respect of the six key strands of age, disability, gender, race, ethnicity, religious beliefs and sexual orientation. This will be particularly challenging for services in relation to children and young people given the different requirements for this age group including for example the recent development of specific standards for child protection.

100. It is equally true that many of the issues relating to the health and healthcare of children are heavily dependent on effective inter-agency working. Local integrated children's services partnerships are accountable for developing appropriate local performance management and quality improvement arrangements. Support for this work is provided through the Quality Improvement Framework for integrated children's services which includes preparation for the Joint Inspection of Children's Services.

101. Local multi-agency Child Protection Committees, accountable to chief executives in health and local authorities along with Chief Constables, also have a role in inter-agency quality assurance and continuous improvement of services to protect children and young people.

102. A key challenge for the NHS in Scotland is therefore to develop quality assurance and performance management measures both within the NHS and within children's services partnerships that drive measurable improvements in health outcomes and healthcare for children and young people.

E-Health :

Information Technology:

103. Information concerning children's health, well being and development is gathered at various points throughout their life, with some components collected universally and others on an episodic basis. However it is often disjointed and is of variable quality. This becomes particularly apparent and problematic where the complexity of a child's healthcare involves several sectors or services.

104. In practice information systems need to facilitate seamless packages of care which include not only specialist hospital care, but also the patient's outpatient care and their primary care and community based needs. These issues become all the more pertinent in situations where children require to access services outwith their local area or across traditional agency boundaries.

105. Information therefore has to reflect this integrated care, so that for the individual patient, communication between professionals from different services, disciplines and agencies is facilitated. There is a requirement for properly integrated information across the child's pathway of care which also links, in the longer term, with information from Social Services and Education Departments. Some aspects of this process may require not only electronic solutions and local protocols but also legislative change.

106. NHS Scotland should be working towards a single integrated system, but in the interim, there are a number of systems which could be brought together or interfaced and this work needs to be progressed.

107. The recognition of the need for integrated information led to the setting up of the Maternal and Child Health Information Strategy Group ( MCHISG). This group has now produced an action plan for the production of integrated information which includes:

• Formation of a national core dataset within a maternity and child health data store. This ensures that there is one record per child, and that information from a variety of sources is pulled together.
• Use of CHI and production of a CHI number at birth. This facilitates records being drawn together, and prevents children being "lost" to the system
• Use of the new "Generic Clinical System", currently being procured. This will give specialist services within hospitals the ability to provide high quality data derived as a by-product of the clinical process rather than as a separate data collection process, as is done at present.

108. This shared approach is also being developed through the eCare project which is a partnership between the Scottish Executive and local authority, health and other agencies across Scotland to develop information sharing systems and processes for a number of client groups, including children. Recent interest in child protection issues has forced multi-agency information-sharing to the top of the political agenda and it is anticipated that eCare offers a potential solution to some of the difficulties involved. There are four pilots currently working in four areas (Glasgow, Aberdeen, Lanarkshire and Dumfries & Galloway)

109. It is also necessary to ensure that the information technology used in respect of children and young people supports patterns of information management that recognise the rights of children and young people in matters such as consent and confidentiality and are responsive to the changes that occur with maturity and increasing autonomy.

Telemedicine

110. The challenges inherent in delivering healthcare to the more remote and rural communities in Scotland are well recognised. These issues are all the more complex when considered in the context of healthcare for the children in these areas This was highlighted in a recently commissioned report, Child Health Services in Remote and Rural Scotland which identified, in particular, the difficulties in providing dedicated paediatric staff ³⁵.

111. It is inevitable that staff caring for children in remote and rural settings will need the capacity to be able to easily access specialist support and advice across the range of clinical disciplines. Telemedicine offers precisely that capacity and the provision not only of the necessary technical infrastructure but also the response capability within the specialist centres, both on an elective and an emergency basis, must be a key element of planning services for such communities.

112. This Framework also identifies the difficulties involved in balancing access, quality and sustainability particularly in specialised areas of paediatric practice which are delivered by small groups of clinicians, sometimes on a centralised basis. Maximising local care depends on the ability to network services, support effective clinical collaboration and provide remote advice. These requirements will, in turn, depend in substantial measure on efficient telemedicine services linking the hospitals and other services caring for children and young people.

113. The issues identified in this section present a challenging agenda for NHS Scotland and its present. How we intend to address them is described in the Section 2 - Delivering Change.