Specifying a service for the diagnosis and management of attention deficit hyperactivity disorder in children and young people

Service components

The key components of a service for attention deficit hyperactivity disorder (ADHD) in children and young people are:

• identification and appropriate referral for assessment and diagnosis of children and young people with ADHD
• management of children and young people with ADHD
• developing a high-quality service for the diagnosis and management of ADHD in children and young people.

Identification and appropriate referral for assessment and diagnosis of children and young people with ADHD

The NICE clinical guideline CG72 on ADHD describes in detail the diagnostic criteria for ADHD in children and young people. The guideline notes that the diagnostic process should include an assessment of the person's needs, coexisting conditions, social, familial and educational and physical health. For children and young people, there should also be an assessment of their parents' or carers' mental health.

The diagnosis of ADHD in children and young people should take place in secondary care, and should only be made by a specialist psychiatrist, paediatrician or other appropriately qualified healthcare professional. However, primary care has a role to determine the severity and impact of the problems. Healthcare professionals should consider:

• a period of watchful waiting of up to 10 weeks
• offering parents or carers a referral to a parent-training/education programme (this should not wait for a formal diagnosis of ADHD)
• children and young people with behavioural problems suggestive of ADHD can be referred by their school or primary care practitioner for parent-training/education programmes without a formal diagnosis of ADHD.

The NICE clinical guideline CG72 on ADHD identifies that referral from the community to secondary care may involve health, education and social care professionals (for example, GPs, paediatricians, educational psychologists, school special educational needs coordinators, social workers) and care pathways can vary locally. When developing care pathways commissioners will need to consider these potential sources of referrals and ensure timely access for assessment, diagnosis and to services including non-pharmacological treatments. Currently, access to non-pharmacological treatment options may vary depending on the area^[1]. Local multidisciplinary teams should have in place systems of communication and protocols for information sharing. Pathways should make it explicit that the person making the referral to secondary care should inform the child or young person's GP.

The 1999 British Child and Mental Health Survey found that many parents discuss their concerns with professionals in education services rather than those in primary healthcare^[2]. Good referral information and use of parent and teacher questionnaires can increase the proportion of children who are referred and receive a clinical diagnosis of ADHD^[3]. This can be useful in making effective use of resources and supporting better access to services. The topic-specific advisory group also identified that the assessment skills and knowledge of the school special educational needs coordinators (SENCO) and educational psychologists can be a useful source of information which may support the assessment process.

Commissioners may need to consider how they achieve full participation and ownership with health, social services and education in developing pathways of care for children with ADHD. Children and young people in mind: the final report of the national CAMHS review identifies that joint commissioning for mental health as a whole is still underdeveloped. Better outcomes for children's services through joint funding: a best practice guide notes this approach can be pivotal in enabling innovative service design, integration and close partnership working.

Management of children and young people with ADHD

Within current service provision, psychosocial approaches - including parent-training/education programmes and training in how to manage coexisting conditions - may not be available^[4]. Therefore commissioners may need to consider how to ensure services are integrated with appropriate provision of interventions and support while making the best use of a multidisciplinary team, especially for children who present with significant comorbidity.

The NICE clinical guideline CG72 on ADHD recommends:

• Parent-training/education programmes are the first-line treatment for parents or carers of preschool children.
• Group-based parent-training/education programmes are usually the first-line treatment for parents or carers of children and young people of school age with ADHD and moderate impairment. This may also include group psychological treatment (cognitive behavioural therapy and/or social skills training) for the younger child. For older age groups, individual psychological treatment may be more acceptable if group behavioural or psychological approaches have not been effective, or have been refused.
• Drug treatment is not indicated as the first-line treatment for all school-age children and young people with ADHD. It should be reserved for those with severe symptoms and impairment or for those with moderate levels of impairment who have refused non-drug interventions, or whose symptoms have not responded sufficiently to parent-training/education programmes or group psychological treatment.
• In school-age children and young people with severe ADHD, drug treatment should be offered as the first-line treatment. Parents should also be offered a group-based parent-training/education programme.
• Drug treatment for children and young people with ADHD should always form part of a comprehensive treatment plan that includes psychological, behavioural and educational advice and interventions.

For the organisation and planning of services NICE clinical guideline CG72 on ADHD recommends that every locality should develop a multiagency group to oversee the implementation of the guideline, coordinate local training initiatives, and oversee the development and coordination of parent-training/education programmes.

Individual-based parent-training/education programmes are recommended by NICE clinical guideline CG72 on ADHD and NICE technology appraisal TA102 on parent-training/education programmes where certain criteria are met. However, the Appraisal Committee stated that group-based programmes offer the best value for money and that commissioners should ensure that providers meet the requirements set down in the guidance.

NICE TA102 on parent-training/education programmes identifies that parent-training/education programmes can be held in a variety of settings including the hospital, clinic, community or home and conducted in groups with 6-12 participants or individually. Programmes can be run by psychologists, therapists/counsellors, social workers or community workers, but in some cases voluntary agencies or parents who have been involved in the programme themselves can be involved. Webster Stratton Incredible Years Programme and the Triple P - Positive Parenting Programme are examples that contain essential characteristics and are sufficiently effective with regard to cost.

Drug treatment should only be initiated by an appropriately qualified healthcare professional with expertise in ADHD and should be based on a comprehensive assessment and diagnosis. NICE technology appraisal TA98 on methylphenidate, atomoxetine and dexamfetamine for ADHD recommends that continued prescribing and monitoring of drug therapy may be performed by general practitioners under shared care arrangements.

Transition from children's to adult services remains a major concern in young people with mental health problems^[5]. Commissioners will need to consider how best to ensure that services are provided for children across all age groups as service configuration and the timing of transition to adult services may vary locally. Commissioners are advised to use this guide alongside the commissioning guide on a service for the diagnosis and management of ADHD in adults.

Developing a high-quality service for the diagnosis and management of ADHD in children and young people

NICE clinical guideline CG72 on ADHD recommends forming multidisciplinary specialist ADHD teams and/or clinics for children and young people. These specialist teams would have expertise in diagnosing and managing ADHD and the role of this team in establishing systems for communication and information sharing, and producing protocols for shared care arrangements, should be identified. The guidance also notes the importance of establishing training and education including:

• Trusts should ensure that specialist ADHD teams for children, young people and adults jointly develop age-appropriate training programmes for the diagnosis and management of ADHD for mental health, paediatric, social care, education, forensic and primary care providers and other professionals who have contact with people with ADHD.
• Teachers who have received training about ADHD and its management should provide behavioural interventions in the classroom to help children and young people with ADHD.

Currently teachers in England are not systematically trained to use these classroom management and teaching strategies^[4]. Commissioners may wish to work with local multidisciplinary specialist ADHD teams to explore opportunities for supporting training for teachers locally.

Service models

Commissioners may wish to consider delivering a service for ADHD in children and young people in a number of different ways, and mixed models of provision may be appropriate across a local health economy.

There is currently a range of approaches to delivering care for children and young people with ADHD, some of which are described in Best practice in ADHD: a review of the literature and care pathway. Examples of service models include: improved interagency working and assessment and the role of the specialist nurse. Questionnaires and assessment tools can also be used to support appropriate referral and in managing demand and improving the conversion rate of the number of children referred and diagnosed within the ADHD services^[3],^[6].

The introduction of shared-care arrangements for prescribing ADHD medication and monitoring as described in NICE clinical guideline CG72 on ADHD, may help specialist centres to manage follow-up appointments and waiting times. However, children and young people with ADHD may still need ongoing and timely access to a multidisciplinary team to optimise care. Commissioners may need to consider what contractual arrangements are in place to support this type of provision and ensure that providers have the appropriate skills and training.

An evaluation of mental health services for young children established that nurses based in the community could be a cost-effective method of providing support for young children with psychiatric illness and their families^[7]. However, few such posts are currently available^[1], especially for nurse prescribers.

Children and young people in mind: the final report of the national CAMHS review identified that some children and young people welcomed a ‘one-stop shop' approach, where they could get help on a wide range of issues, including mental health, as this approach was perceived as being less stigmatising.

The topic-specific advisory group noted that in many areas parent-training and education programmes are not currently in place, and commissioners may wish to consider the third sector as a provider of evidence-based programmes. Families and/or carers of children and young people with ADHD often need long-term support; social care and/or the third sector may be able to provide this, which may release capacity within specialist services.

Therefore commissioners may consider working with third sector providers in the design and delivery of service models that include the NHS working with non-NHS providers and/or the third sector to offer innovative models of service provision. Better outcomes for children´s services through joint funding: a best practice guide identifies the opportunities that joint commissioning provides to enable integrated and innovative service design alongside close partnership working.

Service specification

Local stakeholders, including service users, should be involved in determining what is needed from a service for ADHD in children and young people in order to meet local needs. The service should be patient-centred and integrated with other elements of care for children and young people with ADHD and their parents or carers. Every child matters provides further information on the participation of children and young people in design, delivery and evaluation of services.

The service specification needs to consider:

• the required competencies of, and training for, staff responsible for providing the service, which are described in the full guideline Diagnosis and management of ADHD in children, young people and adults. NICE clinical guideline CG72 on ADHD notes that a multiagency group should coordinate local training initiatives and oversee the development and coordination of parent-training/education programmes
• the expected number of patients (this should take into account how quickly any changes in service provision are likely to take place)
• ease of access and service location; commissioners should engage with service users and other relevant individuals and organisations locally
• care and referral pathways including the identification of children and young people with ADHD in the community
• information and audit requirements, including IT support and infrastructure
• planned service improvement, including redesign, quality, equitable access, and referral-to-treatment times according to the 18 week patient pathway or equitable waiting times locally for those services currently outside 18 weeks
• service monitoring criteria.

Useful sources of information may include:

• The standard NHS contracts for mental health and community services
• Transforming community services: enabling new patterns of provision including a best practice guide for services for children, young people and families. This has been developed to enable the delivery of innovative, modern, responsive and evidence-based community services of a consistently high standard, and to improve the organisations providing community services to ensure they are fit for purpose.
• Targeted mental health in schools is a 3-year pathfinder programme launched in November 2008 aimed at supporting the development of innovative models of therapeutic and holistic mental health support in schools for children and young people at risk of, and/or experiencing, mental health problems, and their families.
• The NHS networks: learning from practice database offers examples of innovative commissioning across the NHS and its partners.
• The Map of medicine provides an information resource that visually organises the care pathway.
• The NICE shared learning database offers examples of how organisations have implemented NICE guidance locally.
• Implementation advice for NICE clinical guideline CG72 on ADHD.

References

1. Tettenborn M, Prasad S, Poole L, et al. (2008) The provision and nature of ADHD services for children/adolescents in the UK: results from a nationwide survey. Clinical Child Psychology and Psychiatry 13: 287-304

2. Sayal K, Goodman, Ford T (2006) Barriers to the identification of children with attention deficit hyperactivity disorder. Journal of Child Psychology and Psychiatry 47: 744-50

3. Sayal K, Letch N, Abd S (2008) Evaluation of screening in children referred for an ADHD assessment. Child and Adolescent Mental Health 13: 41-6

4. National Collaborating Centre for Mental Health (2008) Diagnosis and management of ADHD in children, young people and adults. London: Royal College of Psychiatrists

5. Healthcare Commission (2008) State of healthcare 2008. London: The Stationery Office

6. Foreman D, Morton S, Ford T (2009) Exploring the clinical utility of the development and well-being assessment in the detection of hyperkinetic disorders and associated diagnoses in clinical practice. Journal of Child Psychology and Psychiatry 50: 460-70

7. Thompson M, Coll X, Wilkinson S, et al. (2003) Evaluation of a mental health service for young children: development, outcome and satisfaction. Child and Adolescent Mental Health 8: 68-77