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

Attention deficit hyperactivity disorder (ADHD) is a heterogeneous behavioural syndrome characterised by the core symptoms of hyperactivity, impulsivity and inattention. Symptoms of ADHD are distributed throughout the population and vary in severity; only those with significant impairment meet criteria for a diagnosis of ADHD. Common coexisting conditions in children with ADHD are disorders of mood, conduct, learning, motor control and communication, and anxiety disorders. A survey that included impairment in the diagnosis concluded that ADHD affects around 4% of school-age boys and 1% of girls in the UK ^[1]. However, estimates of prevalence vary depending on the diagnostic criteria used. There is also a correlation between the prevalence of mental health problems in children and young people and deprivation^[2]. Services are mostly provided by child and adolescent mental health services (CAMHS), paediatric services based in child development centres, or in community child health departments and learning disability services.

Although in England and Wales only a minority of children will seek or receive medical treatment, it is estimated that children with ADHD place a significant cost on health, social and education services, reaching £23 million for initial specialist assessment, and £14 million annually for follow-up care, excluding medication. Children with ADHD are also much more likely to have learning difficulties and incur higher educational costs than children without ADHD^[1].

ADHD is a chronic condition that places a significant emotional and financial burden on carers and families, who need a great deal of support to help manage their child's problems^[1]. ADHD is associated with poor school achievement and a higher rate of disruptive disorders. Severe levels of hyperactivity and impulsivity also make children more likely to develop an antisocial adjustment and more likely to show personality dysfunction or substance misuse in later adolescence and adult life^[1].

Evidence suggests that ADHD is underdiagnosed and undertreated in the UK^[3] and that referral pathways can be complicated. Diagnosis and the provision of treatment for children is varied, as is the way services are organised. Children and their families often experience variable waiting times and there may be significant delays between seeking help and diagnosis. In addition, the willingness of children and their families to seek help has sometimes been compromised by the stigma associated with mental health services^[1].

Children with ADHD have complex difficulties. Some of these - for example, learning difficulties and developmental coordination problems - are traditionally covered by paediatric services and some are within the expertise of CAMHS. Another possible complication is the development of severe conduct disorder and aggressive behaviour, which is likely to significantly increase the use of healthcare services and associated costs. In some services there is a lack of consistent assessment and treatment protocols or the ability to assess or manage coexisting conditions^[1]. The NICE clinical guideline CG72 on ADHD notes that children and young people with ADHD would benefit from improved organisation of care and better integration of paediatric, CAMHS and adult services and has made recommendations for the effective treatments of ADHD with comorbid conduct disorders.

Benefits

The potential benefits of robustly commissioning an effective service for the diagnosis and management of ADHD in children and young people include:

• improving the recognition, accurate diagnosis and treatment of ADHD in children and young people and limiting the impact of late initiation of treatment, and of undiagnosed and untreated ADHD
• reducing inappropriate referrals through improving the information provided at referral^[4]
• reducing the distress from the symptoms of ADHD in children and young people and their parents and/or carers
• providing better integrated care and effective treatment that will improve the quality of life of children and young people with ADHD, their families and carers
• reduce the financial implications and psychological burden of ADHD to society^[1]
• reducing inequalities by improving access to services for children and young people with ADHD and, in particular, to non-pharmacological treatments
• increasing patient choice, and improving partnership working, patient experience and engagement
• better value for money, through helping commissioners to manage their commissioning budgets more effectively - this may include opportunities for clinicians to undertake local service redesign to meet local requirements in more appropriate and novel ways.

Key clinical issues

Key clinical issues in providing an effective service for the diagnosis and management of ADHD in children and young people are:

• ensuring that appropriate referral pathways are in place to ensure parity of access to assessment and treatment options including ongoing support
• ensuring access to parent-training/education programmes and psychology services
• ensuring the service is integrated with other health, education and social services for children and young people with ADHD
• ensuring there is training for teachers
• providing effective and efficient clinical care in line with NICE clinical guideline CG72 on ADHD, ensuring that comorbidity is managed appropriately and that the complex needs of children and young people with ADHD and their parents or carers are met
• providing the best possible measurable outcomes for individual children and young people, their parents and carers, and local communities
• ensuring that there is responsive engagement with the third sector, and health, education and social services
• providing a quality assured service.

National drivers

National priorities and initiatives relevant to commissioning a service for the diagnosis and management of ADHD in children and young people include:

• World class commissioning
• The NHS in England: the operating framework for 2009/10. See the vital signs tier 2 national priority target for local delivery, which outlines the effectiveness of CAMHS, and the percentage of primary care trusts (PCTs) and local authorities that are providing a comprehensive CAMHS and ensuring that vulnerable children have access to services
• High quality care for all: NHS next stage review final report identifies the need for locally-led, patient-centred and clinically driven change. Services for children is one of the four key areas identified for change
• National service framework for children, young people and maternity services on child and adolescent mental health identifies the requirements of a comprehensive CAMHS and sets out a plan for improving the mental health of children, including timely access and integrated, high-quality, multidisciplinary services
• Children and young people in mind: the final report of the national CAMHS review
• Every child matters strategy for developing effective and accessible services also identifies the use of pooled budgets as one of the key features of children's trusts to combine and concentrate money effectively to shape local services, and the potential to generate economies of scale and bring efficiencies. The joint planning and commissioning framework for children, young people and maternity services advocates effective joint planning as part of the Local Area Agreement, and commissioning as being at the heart of improving outcomes for children and young people
• The Children Act 2004 provides the legal underpinning for the transformation of children's services as set out in particular Section 10 of the Act provides the statutory basis for Children's Trusts (the duty to cooperate)
• The Children´s Plan commitment to increasing capacity, reducing waiting times, and increasing the numbers of children and young people benefiting from specialist CAMHS, and the quality of teaching for children with special educational needs
• Healthy lives brighter future the strategy for children's and young people's health produced by the Department of Health and the Department for Children, Schools and Families
• Guidance on promoting the health and wellbeing of looked after children sets out the roles and responsibilities of PCTs and commissioners and local authorities
• The Care closer to home initiative outlined in chapter 6 of the white paper ‘Our health, our care, our say'
• Commissioning framework for health and well-being
• Considering the impact of patient choice
• A stronger local voice: a framework for creating a stronger local voice in the development of health and social care services
• Implementation of NICE clinical and public health guidelines. These are currently core standards, and performance against these standards will be assessed by the Care Quality Commission in line with Standards for better health. See also the Care Quality Commission 2009-10 periodic review indicators for CAMHS.

Although many or all of these priorities may be relevant to the services nationally, your local service redesign may address only one or two of them.

References

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

2. Healthcare Commission (2008) Bringing value for money to mental health - In services for adults, children and adolescents. London: The Stationery Office

3. 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

4. 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