< Previous | Contents | Next >

Immunology and Allergy Services in Scotland

IV PROVISION OF PAEDIATRIC SERVICES IN SCOTLAND

Introduction

71 In Scotland, there is one paediatrician, based at The Royal Hospital for Sick Children, Glasgow, who specialises in paediatric infectious diseases and immunology. This appointment, the first of its kind, was made in 1995. Prior to this date, immunology services for children had evolved in different ways throughout the country and, to a certain extent, this is still reflected in the present pattern of management. Within the UK there are two supra-regional centres (London and Newcastle) which are centrally-funded for bone marrow transplantation and immunodeficiency diseases. It is anticipated that bone marrow transplantation for complex cases will continue to be referred to these two centres for the foreseeable future. This chapter provides an outline of the present service provision for children suffering from allergy and primary immunodeficiency. It identifies key deficiencies and offers recommendations for improvement.

Outline of Service Provision

Allergy:

72 Conditions related to allergy, such as asthma, eczema and rhinitis, are very common in children. For the most part, these conditions are appropriately managed in primary care. General practitioners are likely to seek specialist advice in cases of children who present with severe eczema, food and drug allergies and anaphylaxis. Consultant advice may be offered by a general paediatrician or, in certain cases, by consultants in other disciplines (e.g. dermatology) depending upon the nature of the condition. Table VIII illustrates the different referral patterns in each of the four centres as a consequence of existing consultant establishments and availability.

Primary Immunodeficiency:

73 Table IX shows the routes of referral in each of the four centres for children who present with primary immunodeficiency in Scotland. Elsewhere, referral patterns vary. In the West of Scotland, some cases are managed locally with referral to Glasgow for advice / shared care. In the East of Scotland, cases from West Lothian and Fife are either referred to Edinburgh or Newcastle. Children from the Highlands are looked after locally with advice being sought from Glasgow.

Key Deficiencies in Paediatric Service Provision and Recommendations for Improvement

74 Problems with allergy are sufficiently common for services to be required at district general hospital level with access to specialists in all four centres in Scotland. There are paediatricians with an interest in allergy in all these centres, albeit from a variety of backgrounds. The Working Group is of the view that not all children with severe allergic problems are at present accessing the available specialist services and that the level of these services is inadequate. It is particularly important that those who are seen within the context of an adult-based service have access to paediatricians, paediatric dietetics and links with community child health.

75 Primary immunodeficiency in children is rare, (1 in 10,000 live births).²⁹ Experience in any one regional centre within Scotland is therefore limited and the services children receive are not uniform throughout. At the present time there are no good sources of data detailing prevalence of cases. Some children who are at present travelling to England for assessment and management may receive a good standard of service accessing resources already available within Scotland.

76 The diagnosis of immunodeficiency in children may be complex and it requires a high degree of expertise in the interpretation of laboratory results. Normal values are ill-defined in small children, and lower limits of detection of, for example, IgA may overlap the normal range in young children often leading to inappropriate interpretation. It is therefore essential that those producing laboratory reports in these circumstances are equipped to interpret them accurately, or that such samples are sent to a laboratory where staff are experienced in dealing with large numbers of paediatric samples.

77 It is recommended that a Managed Clinical Network for paediatric immunodeficiency should be established for the whole of Scotland. Given that good relationships with the English supra-regional centres is essential, the Group believes that the service should aim for a package of care in which communication is sufficiently developed to minimise the need for children to make repeated journeys south of the border.

78 Links should be retained with both centres in London and Newcastle rather than reliance on one or the other for the following reasons:

• where there is a clinical need for those children with Severe Combined Immune Deficiency to be referred to England (for example, where the need for urgent bone marrow transplantation may be paramount). One centre may be able to offer a bed sooner than the other at any one time

• some forms of primary immunodeficiency are associated with severe liver disease which requires specialist hepatology input. The two major paediatric liver units in the UK are in Birmingham (which would involve a separate journey) and London, where a regular joint clinic takes place involving both the hepatologists and the immunologists. It therefore seems logical and more efficient to refer children at risk of severe liver disease to London

• direct travel routes may be more easily accessible to one or the other centre depending on the region in Scotland from where the child originates

• children requiring bone marrow transplantation may be hospitalised for very long periods of time, with severe disruption to family life. Some families may be able to identify sources of support (e.g. friends, relatives) in one city or the other, and this factor should be taken into consideration when referrals are made to English centres.

< Previous | Contents | Next >