Website of the Department of Health

For some paediatric specialties - e.g. cardiology and oncology, all activity was regarded as specialised, but for others only some conditions and interventions were considered to be specialised. Difficulties arose however, when considering how to separately identify the specialised activity from other tertiary paediatric activity (where only some activity in a specialty is regarded as specialised) in hospital information systems.

Identification of specialised conditions/treatments, as distinguished from non-specialised, is complicated and depends on a number of factors as set out below:

Since current information systems are unable to identify many of the features listed above, a pragmatic approach has been taken. All tertiary paediatric services will be regarded as specialised for the purposes of this definition at this stage.

Many tertiary centres also function as a secondary service for their local population. Some commissioners may take the view that the secondary services being delivered alongside the tertiary services within a specialised centre should also be included within specialised commissioning arrangements, since it may be difficult to separately identify the secondary and tertiary activity, and/or since it may make most sense to undertake the planning of the two co-located services together.

One approach is to develop codes or a 'tagging system' which enable specialised activity to be distinguished from other paediatric activity. This information would allow real comparisons to be made between services but also, more importantly, assist in ensuring that specialised activity is taking place in appropriate locations.

In order not to lose the longer term aim of focusing on specialised activity, each specialty listed within this definition includes a description of the activity that is regarded as specialised. Commissioners should take note of this and ensure that adequate arrangements are in place for addressing these conditions and interventions even though this definition formally includes all tertiary paediatric activity.

Key principles underpinning children's services

A National Service Framework (NSF) on Children's Services is due to be published in 2003. When this is produced it will be the key document that should inform any commissioning decisions on children's health services. Until that time the principles that are incorporated within 'Children First' (1993) should continue to apply to all children's services.

Specialised health care for children will be provided by specialist clinicians either directly in a specialist centre, in partnership with local hospitals through a shared care or outreach arrangement, or in children's own homes through a specialist outreach team. The location of care is not the determining factor in identifying the specialised nature of a treatment regime. Any place of delivery should be child-tailored because of the long-recognised need to treat children as children, as close to home as possible, and to involve families in their care.

Children with serious conditions require support from a range of disciplines including physiotherapists, dieticians, speech and language therapists, psychologists, nurses and many others. These staff will need to have specialist paediatric training to be able to address the very particular needs of children in these circumstances. In some circumstances some of these support services will also act as services in their own right and receive direct referrals - e.g. radiology, pathology, speech and language therapy and anaesthetic services.

Shared care and outreach services

The concept of a network of care is particularly important for paediatric services.

Specialist centres will offer a high level of expertise and care to those who need this level of input. Shared care arrangements (care shared between a specialist centre and a local hospital or community services) enable specialist clinicians to diagnose illnesses and set treatment plans whilst allowing the treatment to be carried out in a more local setting. Outreach arrangements are also important in paediatric services. This involves specialist clinicians travelling out to see children in local clinics who may require further examination than local clinicians can provide.

Outreach and shared care arrangements enable children to have access to the expertise they require without the need to spend more time than necessary in specialist hospitals which will often be distant from their homes.

Clearly, shared care arrangements are to be encouraged and these should be formalised with agreed referral protocols and possibly designation processes. The local component of shared care arrangements should be commissioned through local arrangements. Where possible individual care plans should be agreed between tertiary and local centres.

The age when it is appropriate for a person to move from paediatric services to adult services will vary according to the individual and the circumstances of their illness. Whilst most children will be ready to move by the time they reach 17, there should be flexibility to cater for individual children's needs. Appropriate transitional arrangements should always be in place. Many children with chronic illness come to adolescence and adult life with the need for continued specialised medical input. Historically both the transition process and adult services have been deficient for adolescents but many good services in this area have now been developed. For all children with a chronic disease, there need to be specific arrangements for both adolescents, whilst under specialist paediatric care, and for the transition to an adult service which caters for their specialised needs.

Research and specialised clinical services

There is frequently a close relationship between specialised clinical services and clinical research, which is, in the main, mutually beneficial. However if a specialised service is commissioned it should be available to all patients appropriate to the service specification. It is not appropriate that patients should be accepted or rejected according to whether they fit the requirements of a research protocol. Where a service is funded by and for research this is quite different. Where there is a 'mixed economy' the precise arrangements will need to be agreed. This is not intended to limit clinical research but to ensure that fully funded specialised services are available to those who need them.

Finance and information Issues

Health Resource Groups (HRGs) for paediatric services are currently unavailable but it has been agreed that the NHS Information Authority will now prioritise this work. When paediatric HRGs are available, providers will be able to use these as the national currency for paediatric services. The exceptions to this are paediatric intensive care (PIC) and neonatal intensive care (NIC) services where bed days are regarded as the most appropriate currencies for these services.

In relation to shared care and outreach services, the activity undertaken by specialist clinicians in diagnosing conditions and setting treatment plans will be regarded as specialised but the shared care provided in the local hospital will not be regarded as specialised. The costs incurred by specialist centres in providing outreach services will be regarded as specialised but the costs incurred by local services in hosting outreach clinics will not be regarded as specialised.