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

1 NATIONAL DELIVERY PLAN - DRIVERS AND CHALLENGES

1. There are over a million children and young people under 18 years of age in Scotland. They make up a fifth (20.4%) of the total population of 5.14 million. Although the numbers of children had fallen over the past few decades as a result of a falling birth rate this trend has changed markedly in the more recent past. The General Fertility Rate has risen by 14% in the last 5 years and the number of births per annum (57,781 in 2007) is now at the highest level since 1998-1999.

2. The UN Convention on the Rights of the Child Article 24 recognises the responsibility to ensure that children enjoy;

"the highest attainable standard of health"

and have access to

"facilities for the treatment of illness and rehabilitation of health".

3. One of the most significant changes in health care over the last 50 years, reinforced very explicitly by the outcome of the Bristol Inquiry in 2001, has been the growing acknowledgement that children are not "small adults". In addition to being physically, mentally and socially distinct from their adult counterparts, the illnesses and conditions which they experience and the ways in which these affect them are significantly, and sometimes absolutely, different.

"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 health care needs."

Professor Ian Kennedy, Report of the Public Inquiry into Children's Heart Surgery at the Bristol Royal Infirmary (2001)

4. Childhood is also a time of rapid development - the differences between the newborn baby and the rapidly maturing teenager are more fundamental and substantial than the differences that emerge across the subsequent decades of adult life. This developmental process has to be understood in regard to the impact of both illnesses and their treatment.

5. As a consequence of these issues the requirement for children to be cared for by staff trained in their particular needs and conversant with their pattern of disease has increasingly been reflected in the way health services are structured. This has led not only to the emergence of paediatrics as a general area of specialisation but also to the development of a range of specialist children's services, specific to the whole spectrum of clinical conditions - respiratory, cardiac, neurological, orthopaedic, immunological and many others - at least as extensive as that in adult medicine or surgery.

6. The need for children to be able to access specialist care is self evident. The challenges faced in providing such care are very real, not least because the number of children requiring highly specialist care within any given specialty is often small.

7. Around 30,000 adults develop cancer each year in Scotland compared with fewer than 200 children and young people. The same pattern is seen across many specialty areas. This lower activity level in no way reduces the need for the individual patient to have access to specialist expertise and facilities, but it does create a different set of problems from those facing many aspects of adult medicine which often relate to high volume and demand, particularly with an ageing population.

8. In practice the specialist consultant base for many paediatric medical specialties is fewer than 10 across the country and, in a number of specialties, is fewer than five. Many specialist nurses and allied health professionals ( AHP) work as single-handed practitioners, or in very small teams.

9. These issues present very practical challenges for the sustainability, accessibility and equity of services:

• Small services and a limited specialist workforce are inherently vulnerable. Loss of a single member of staff can threaten service provision.
• Individual NHS Boards, and in some specialties whole regions, are not self sufficient in service provision.
• Maintaining service provision, particularly out of hours, may be impractical at a local or even regional level.
• Training capacity in Scotland, or even across the UK, is proportionally restricted in ways that can affect staff development, availability and recruitment.
• Peer support, education and professional development are difficult.
• Economies of scale in terms of staff and facilities are more difficult to realise, with implications for service cost and investment.
• Service accessibility may require travel - either by the patient (and family) to the specialist centre, or by staff to support local services, both of which raise problems that must be addressed.
• Providing an appropriate level of local service, particularly in District or Rural General Hospitals, requires staff to develop a range of specialist expertise. Maintaining, refreshing and replacing such expertise can be difficult both for the organisation and the individual practitioner.

10. Historically these issues have manifested themselves, and been addressed, differently across the country, giving rise to inequity of service availability, accessibility and quality. While recognising the importance of ensuring local services are developed in ways that reflect local need, the challenges facing specialist children's services will always require solutions that involve collaborative approaches across NHS Board and regional boundaries.

11. Vital though such collaborative approaches are, they are not without their own challenges in respect of:

• Maintaining integration from specialist care through to community-based local services.
• Co-ordinating planning, prioritisation, service development and resource allocation.
• The employment and deployment of staff across organisational boundaries.
• Governance and accountability.

12. In addition to these issues, which arise as a result of activity patterns, there are a number of specific challenges emerging as a consequence of changing patterns of disease, improving outcomes or planned service change.

• The incidence of some conditions is increasing:
• Type 1 diabetes in childhood has risen threefold since the 1970s.
• Crohn's disease in children is four times more common than 20 years ago.

In both these conditions Scotland now has one of the highest incidences in Europe.

• Welcome improvements in survival are increasing and changing service demand:
• Around 1 in 3 very low birthweight babies will be disabled, half of them severely, and will require life-long and often complex care.
• A range of conditions, previously considered life-limiting within childhood, are displaying improved survival rates into adult life. This progress is not always matched with patterns of service provision within adult services that offer continuing care.
• The move of the upper age limits for children's services from the 13th to the 16th birthday, recommended in the National Framework for Service Change in the NHS in Scotland, represents a positive step forward in the provision of age appropriate care. However, it will bring challenges both in terms of the shift in activity and, in some specialist services, the need to address patterns or manifestations of disease previously infrequently seen in paediatric practice.

13. These issues, significant in their own right, exist within an environment of wider service pressures particularly in regard to medical staffing. Changes in the career structures and employment arrangements for medical staff in training are currently creating instability in the overall staffing framework for paediatric services upon which all the individual specialist services depend. This is most immediately affecting the District General Hospital ( DGH) children's services but also impacts on the specialist hospitals.

14. All of these issues bring with them the need for a proactive and co-ordinated response from within the NHS in Scotland. This must engage local, regional and national service planners and providers and be directly influenced by the needs and views of children, young people and their families.