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Section 1 Introduction
Background
1. Specialist children's services 1 in Scotland, as elsewhere in the world, tend to be characterised by their complexity, low volume and dependence on small numbers of highly trained staff. Patterns of disease and treatment vary considerably from one specialty to another. As a result of this, a range of service models are required to address the needs of individual specialties.
2. Much valuable work has already been undertaken. Annex 1 documents the range of specialist activity that is now commissioned either as a national service within Scotland, or in some areas characterised by very low activity levels, from specialist centres elsewhere in the UK.
3 .It is, however, recognised that there remains a significant range of individual services which continue to face real pressures in sustaining and delivering high quality clinical services and best outcomes for patients. There is also increasing recognition of the interdependence of key services and the consequent need to ensure that long term service planning is effectively co-ordinated across specialties.
4. In 2004, the Child Health Support Group ( CHSG) conducted a review of specialist services in four pilot areas covering children's cancer, respiratory medicine, gastroenterology and neurology.
5. The resultant Youngson Report made specific recommendations on service provision, national planning, workforce issues and information technology development. A clear message from this exercise was that, for specialist services to be sustained and delivered across Scotland, there is a need for an effective pattern of clinical networks, with the shape and distribution of each network being specific to the specialty in question.
6. In 2005, the Specialist Paediatric Sub-group of the National Framework for Service Change (Building a Health Service Fit for the Future), recognised that the future planning of child health services should be underpinned by the following objectives:
- development of managed clinical networks at a regional and national level;
- redesign of services, using a four-level model of care that describes how services can be provided and organised at a local, district general hospital, regional and national level;
- provision of a specialist children's workforce that meets working time regulations and service requirements;
- development of specialist/consultant roles for nursing and Allied Health Professional ( AHP) staff;
- the development of education, training and support to ensure that staff can provide a 21 st century service;
- the development of regional and national planning for children and young people's specialist services.
7. The importance of addressing these issues was reinforced in Delivering a Healthy Future: An Action Framework for Children and Young People's Health in Scotland, which sets out a ten-year action plan to assist hospital and community-based health services to respond to the challenges of improving and maintaining children's health in the 21 st century. The Action Framework has been recognised in Better Health, Better Care as underpinning the future development of specialist children's services.
8. To take these areas of activity forward, the National Steering Group for Specialist Children's Services in Scotland was established in 2006 with the aim of producing this National Delivery Plan - a commitment reinforced in Better Health, Better Care.
9. Information regarding the remit and membership of the Steering Group can be accessed from the Specialist Children's Services website.
10. Detailed work has been undertaken on a range of areas which included specific service reviews, planning and commissioning, networks, age appropriate care, models of care and a review of workforce requirements.
11. In undertaking its work, the National Steering Group ( NSG) recognised that a number of other reports pertinent to aspects of specialist children's services had either recently been published, or were the subject of parallel work. For these reasons the following have not been included in this National Delivery Plan:
12. The NSG has sought to avoid duplicating work already completed or underway, while also seeking to ensure that wherever relevant, the National Delivery Plan complements other national work streams. It is also recognised that this National Delivery Plan, even taken in conjunction with the workstreams identified above, does not address the full spectrum of specialist children's services. Further work is therefore required in respect of services including:
- Diagnostic radiology
- Pathology
- Burns
- Palliative care
- Ophthalmic
- ENT
- Dental surgery
- Immunology and allergy
- Renal and urology.
Stakeholder Involvement
13. The NSG has sought a wide range of opinions in developing the recommendations included in this National Delivery Plan. The NSG has either attended or organised over 100 meetings and received numerous comments and items of correspondence, many of which highlighted and reinforced the need for action in addressing the real challenges facing the delivery of specialist children's services.
14. The NSG has been particularly impressed by the children and young people, their families and carers who have at times overcome immense barriers in gaining access to the care required.
15. The NSG has also embarked on an extensive engagement exercise from October 2006 to January 2007, where a range of issues covering workforce, accessibility of services, age appropriate care, models of care and future trends were discussed (Annex 2).
16. There are excellent examples of involvement already in place. For example, the patient forums that have been established for the two new children's hospitals. However, the NSG would like to see involvement strengthened in the future especially in the development of Managed Clinical Networks ( MCNs), as described in this document.
17. There were three particular issues highlighted during the involvement process which although strictly not part of the NSG remit, should be addressed as a matter of urgency by the Scottish Government. They were:
- Access to aids, equipment and adaptations to housing.
- The additional, and sometimes hidden costs, that are associated with many specialist health conditions for example travel, accommodation and child care.
- The pressures faced by families coping with a child or young person with serious or chronic health problems.
Recommendations
The Scottish Government should review the process for the provision of aids, adaptations and equipment for children and young people with specialist health needs.
The Scottish Government should consider the additional cost implications for children, young people and their families that arise from dealing with complex health conditions.
18. As well as the more general engagement process, the NSG has actively sought the views on specific services, for example children's cancer, which has resulted in an open and robust exchange of views.
19. The different workstreams produced over 80 recommendations which the NSG shared at a national open session on 26 November 2007. With almost 200 people attending, the discussion was both challenging and constructive. A full report from the day can be accessed on the National Steering Group for Specialist Children's Services website.
20. This exercise represents the most wide ranging review of these services that has ever been undertaken and has extensively informed the development of this National Delivery Plan.
We would welcome your views on the issues and recommendations raised in this section.
Values and Principles
21. This section describes the values and principles the NSG has used to underpin the overall approach to this review and the subsequent recommendations made.
22. The broad aim of the National Delivery Plan is to provide the best clinical outcomes achievable for children and young people in an integrated service that improves access and quality of care. It focuses on the provision of specialist services, but should be interpreted bearing in mind that the vast majority of children's services in the NHS will continue to be provided in local communities rather than in hospitals.
23. The NSG has developed the National Delivery Plan by working with those who use and are involved in the planning, commissioning and delivery of specialist services, including Regional Planning Groups, NHS Boards, clinical staff, the voluntary sector, patient representatives and professional organisations.
24. In the wide-ranging reviews, consultations, meetings and discussions which have helped to develop the National Delivery Plan, the NSG has focussed on meeting the needs of current and future generations of children and young people.
25. This National Delivery Plan proposes an approach to service delivery and supporting mechanisms that aim to:
- make sure that services provided are better, quicker, safer and closer wherever possible, while recognising that children and young people may have to travel for some specialised services for more complex treatment;
- recognise the changing health needs of children and young people in Scotland and to plan services accordingly;
- improve services for the 21 st century by providing a prioritised programme of service improvements;
- address barriers in accessing services based on geography and inequalities;
- recognise the dependence of children's specialties on the adequacy of general paediatric services;
- make the best use of new technologies and treatments, with remote imaging, electronic transfer of results and multi-site conferencing to decide on case management;
- identify the challenges and engage children and families, public and staff in developing solutions;
- develop new roles and skills to meet the child health challenges of the 21 st century;
- make sure that specialist services are provided in the four children's hospitals in Aberdeen, Dundee, Edinburgh and Glasgow;
- support the development of two new hospitals for children and young people in Edinburgh and Glasgow, to complement the new provision in Aberdeen and Dundee;
- promote networking between the four children's hospitals and improve their links with the other children's services in their areas, for example, District General Hospitals and Community Health Partnerships.
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