The Scottish Government

« Previous | Contents | Next »

Listen

Section 2 Why Change is Needed Now

26. Within Scotland there have been difficulties in sustaining the current pattern of delivery of specialist children's services. The main pressures relate to:

• Specialist services where the patient numbers are small, the clinical condition is complex and relatively rare. For some centres, the 'critical mass' is insufficient to retain clinical skills.

• The need to design services and develop staffing models that will meet the constraints of Working Time Legislation, the reduction in junior doctor hours and the impact of Modernising Medical Careers.
• The lack of data on the quality of service provision and clinical outcomes.

• The desire to support local service provision.
• The requirement for these services to be supported by an integrated information technology infrastructure that allows exchange of information across services.

27. The emerging picture is that models for the provision and organisation of specialist children's services need to specifically reflect the prevalence and complexity of clinical conditions, and the facilities and clinical expertise required to ensure Scottish children and young people have the best health outcomes.

28. In practice the models of care will be specific to each service and reflect the need to deliver specialist care throughout Scotland. This means that:

• some specialist inpatient services providing complex low volume care may be based in only one or two specialist centres, for example cardiac surgery, spinal surgery or paediatric intensive care;
• others requiring significant input from specialist teams may be provided in each of the four specialist children's hospitals, for example complex respiratory and gastroenterology;
• across the specialties, District General Hospital children's services and Community Health Partnerships should be supported to contribute effectively to clinical networks; and
• there should be increasing opportunities for specialist care to be provided in the community.

Specialist Children's Services - The Challenges

29. Although paediatrics is sometimes viewed as a single specialty, in practice the multiplicity of conditions that affect children and young people, and the range of specialist services that are required for their care, is at least as broad and complex as in the adult sector.

30. Some of the challenges currently facing specialist children's services relate to changes in the patterns of disease. Despite real improvements in many aspects of the health and care of children and young people over recent decades there remain clinical conditions:

• in which the incidence is rising, for example diabetes, inflammatory bowel disease;
• where welcome improvements in survival are inevitably increasing overall patient numbers, for example muscular dystrophy, extreme prematurity; and
• where some outcomes do not match those achieved in other countries, for example some cancers ²³, cystic fibrosis ⁴⁵.

In Scotland, there has been a fourfold rise in the incidence of childhood Crohn's disease over a 30-year period. This rise has been mirrored in most European countries, although the highest rates are found in Scotland. (Paediatric Gastroenterology, Hepatology and Nutrition Services in Scotland, May 2004.)

Around 1:3 very low birth weight babies (less than 1000g) will be disabled, half of them severely, and will require long term, and often complex, care.

Although the management of Duchenne Muscular Dystrophy ( DMD) is improving, in comparison with best European practice, Scotland and the UK lag behind Denmark. In a country with the same population size and birth incidence of DMD as Scotland, they have twice the number of adult DMD survivors; 79 in Denmark compared with 39 in Scotland.

Since 1970 the infant mortality for cystic fibrosis has fallen from 16% to 1% and median life expectancy increased from 20 years to an estimated 40 years for someone born in 1990. (Lung and Asthma Information Agency)

31. In addition to these emerging clinical challenges, many of the more difficult problems facing specialist children's services arise because the numbers of children accessing individual services is often not large, particularly compared with the adult sector. By way of example, around 30,000 adults develop cancer each year in Scotland compared with less than 200 children and young people. While the number is fortunately small, this poses significant challenges to the provision of sustainable and accessible services. The lower activity levels in no way reduce the need for specialist expertise or facilities in the management of the individual patient.

32. This pattern of small services with a limited specialist workforce distributed, sometimes unevenly, across the country raises significant problems regarding sustainability and consistency:

• the loss of a single member of staff can threaten a local or regional service;
• provision of 24/7 access to specialist advice is often impractical at a local or even regional level;
• low activity levels are reflected in restricted professional training capacity across the UK which can materially affect training and recruitment;
• small cohorts of staff in District General Hospital services are required to develop a significant range of specialist knowledge if elements of care are to be provided locally. Maintaining, refreshing and replacing such expertise can be difficult for both the organisation and the individual practitioner;
• services may be dependent for specialist input on clinicians from the adult sector. This raises issues regarding individual clinician's experience in paediatric practice and the capacity to make replacement appointments.

The specialist consultant base for most paediatric medical specialties in Scotland is under 10 consultants spread across the whole country, and in many specialties the consultant cohort is less than 5.

Many specialist nurses or allied health professionals ( AHP) are either single handed practitioners or part of small professional groups making peer support and development a challenge.

33. As well as the challenges around sustainability, these issues also result in significant variations with regard to equity of access and quality of service. Access is a key issue for children and their families. Where care cannot be provided locally, attendance at a geographically distant hospital can be difficult for the child and substantially disruptive for parents, carers and other family members while also causing other problems such as loss of schooling, financial difficulties and time off work. Where the nature of a child's condition requires multiple attendance or prolonged hospitalisation these effects are magnified in ways that can become a significant threat to family life.

34. In response to these challenges, there is a clear requirement for specialist children's services to be planned and delivered in a well structured and consistent manner across Scotland. No individual Health Board is self-sufficient in terms of specialist children's services, and most services operate at a regional or national level with a requirement for patients, staff and services to cross NHS Board, and often regional, boundaries.

35. However, delivering cross-boundary services also raises significant issues in regard to:

• ensuring integrated care across primary, community, secondary and specialist provision;
• the co-ordination of service planning and prioritisation;
• consistency of funding, including the funding of individual care packages and drug treatments;
• variations in employment arrangements;
• governance and accountability at a whole system level.

36. The provision of specialist services to children and young people therefore faces real challenges which require to be fully understood and intentionally addressed if Scotland is to ensure consistent, high quality, equitable and sustainable services and the best of outcomes for the children and young people who face their own challenges in terms of serious, life limiting or long-term conditions.

Do you think that the key challenges facing specialist children's services are sufficiently described?

Are there any additional challenges that you think should be highlighted?

« Previous | Contents | Next »