Attention deficit hyperactivity disorder (ADHD) has a significant impact on people with the condition and on their families. It is possible to improve the lives of individuals and families affected by ADHD, but this requires input from several agencies, and in some cases, the use of medication. Service provision for ADHD needs to take into account the complexities of the disorder and its treatment. This article presents a study on a consensus for the essential and important components of a service for ADHD.1,2 The statements and recommendations from this study supplement the NICE guideline on ADHD.3
Attention deficit hyperactivity disorder is one of the most commonly occurring behavioural conditions in children and young people up to the age of 18 years.4 It is defined by NICE as ‘... a heterogeneous syndrome characterised by the core symptoms of inattention, hyperactivity, and impulsivity’.3 It is estimated that the worldwide prevalence of all ADHD is around 5% of children and young people aged 18 years or under.5
Individuals with ADHD will not have every feature of the disorder: hyperactivity and impulsivity will predominate in some cases, others will be mainly inattentive, while a few may be severely affected. All people with ADHD have a condition that persists through the formative years, and which puts them at risk of low self-esteem, academic underachievement, anti-social behaviour, and accidents.
Identification and appropriate management is essential to mitigate the effects of ADHD, and requires joint working between educational, healthcare, and social care organisations. However, there are several reasons why a child who may meet the diagnostic criteria for ADHD is not identified and treated:
- although a minority group, some doctors do not accept that ADHD exists as a separate entity
- it is likely that some parents and GPs do not have sufficient awareness of the condition to consider a diagnosis of ADHD and refer for subsequent specialist assessment6
- one study has shown that the period between parents first approaching their GP and the child receiving a specialist assessment may be anything from 9 months to 5 years.6 The delay between the disorder being suspected and treated is time in which the child could have received appropriate support to help with their education and social development.
Attention deficit hyperactivity disorder can impact on many areas of a child’s life and a comprehensive package of care is therefore needed for children with ADHD and their families, which should involve both educational and health aspects. This will require involvement from special educational needs coordinators, school nurses, multidisciplinary specialist ADHD teams, paediatrics, mental health and learning disability trusts, forensic services, child and adolescent mental health services (CAMHS), the Children and Young People’s Directorate (including services for education and social services), parent support groups, and those with a significant local involvement in ADHD services. Regular review and communication between all healthcare professionals and agencies is essential.4
A consensus view on best practice for ADHD
In recognition of the complexity of service provision for ADHD, a consensus was developed with the objective of defining best practice. A seven-person steering group, which included representation from specialists in child psychiatry (doctors and a nurse), a lead pharmacist, and primary care, agreed on 40 statements relating to the commissioning and delivery of a service for ADHD.
A Delphi method was used in order to establish wider consensus from professionals working in the ADHD field; this was achieved in a questionnaire completed at ADHD meetings held across the UK. Meeting invitations were sent to all professionals involved in the care of people with ADHD.1,2 The 40 statements were presented to 122 healthcare professionals working with people with ADHD (including child psychiatrists, paediatricians, nurses, and primary care), to assess the degree to which these individuals agreed with the statements.1,2 Agreement was measured using a four-point Lickert scale, which allows respondents to record how strongly they agree or disagree with the statement.2 The Delphi approach was adopted in order to use responses to modify the consensus process.
It was found that all statements achieved agreement across the respondent group at the level of ?74.9%, and 36 statements achieved over 90% agreement.2
The statements that received the strongest level of agreement are outlined below:2
Care coordinators and ADHD
- A care coordinator should be available to assess the clinical and non-clinical needs of each patient and enable appropriate care (93.2% agreement).
The care coordinator provides a central point of contact for the patient, family, and carer, and any member of the multidisciplinary team (MDT) could hold this responsibility. A key focus of this role is the provision of appropriate access to support services.
A subsequent statement defined the skill set for the care coordinator, which should include:2
- specialist ADHD knowledge
- clinical background in ADHD
- ability to work independently
- ability to assess patients and refer appropriately
- understanding of treatments and their side-effects.
The role of care coordinator is a training and development opportunity for any member of the MDT,5 and needs to be taken into account when commissioning the service.
Commissioning ADHD services
- Commissioning of services for ADHD should include seamless transition between young person, adolescent, and adult services (95.8% agreement).
The transition from services for young people may be an issue as separate adult services are not available in many areas of the UK.2 Individuals who have problems with ADHD that persist into adulthood are often cared for by generalist community mental health teams. Some young adults with continuing needs run the risk of not receiving continuous care if the transition to a different service is not managed carefully. Attention deficit hyperactivity disorder should be recognised as a long-term condition requiring input over many years.
Engaging primary care
- The primary care team should ensure that children with possible ADHD are referred for diagnosis quickly (95.8% agreement)
- Support should be provided locally to assist GPs in appropriate management of the ADHD patient journey (96.7% agreement).
Shared-care pathways may be useful in ensuring appropriate patient assessment and prescribing of medication. The provision of appropriate support should include education, training, communication tools, clinical guidelines, and care pathways.
- Specialist ADHD nurses are an invaluable resource in the role of the care coordinator (90% agreement)
- The ADHD nurse should liaise between clinical and community agencies, and family to ensure defined clinical outcomes (96.6% agreement).
Specialist ADHD nurses monitor children and young people who are being treated and also provide support to their families. In some areas, the ADHD nurse may also have the role of care coordinator.
- The patient journey should include the process of assessment, diagnosis, and each subsequent stage of care and management, including transition across services (98.3% agreement)
- Evidence-based integrated care pathways (ICPs) are available as models for the management of ADHD and may be used to facilitate implementation locally (98.2% agreement).
Transition management plans exist for patients with ADHD in some trusts, but may be lacking in others because of the absence of an adult service. The prevalence of ADHD in adults is 2.5%, and thus young people currently treated for this condition by CAMHS and paediatric services may require treatment beyond the age of 16 years.7 It is important that the needs of adolescent and adult patients are addressed by local service configuration and defined in commissioning service specifications.
- The views of the young person should be central (91.9% agreement).
This statement supports the participation of the patient in discussion of treatment options following appropriate guidance, but does not imply that he or she should have free choice. The role of professional guidance and counsel in empowering patient choice is vital.
Children with learning disabilities
- Clinicians managing children with learning disabilities should have training to manage behavioural issues arising from ADHD and possible side-effects of treatment (98.2% agreement).
Diagnosis of ADHD
- Early access to diagnosis is important to improve outcome (97.5% agreement)
- All clinicians in primary care need to be aware of the prevalence of ADHD and the current under-diagnosis
The diagnostic rates of ADHD in girls may be lower than in boys as they tend to be less disruptive. However, they may still struggle at school and experience other problems as a result of ADHD; the disorder in girls may be associated with more severe cognitive and language problems, and greater social problems.
Engagement with other agencies
- Schools may be the first to become aware of potential ADHD and should be supported to make recommendations for referral (96.7% agreement)
- Services need to be aligned with the justice system and youth offending teams (YOTs) (94.0% agreement).
In order to provide timely assessment and treatment of ADHD, joint working with the local authority is important. Education for teachers will facilitate this process and may be supplemented by referral pathways. Special educational needs coordinators and school nurses can refer patients directly for ADHD assessment.
Data suggest that some subgroups of people with ADHD are at increased risk of criminality; substance abuse; accidents; motor vehicle accidents; suicide; and educational, behavioural, and other psychiatric difficulties.7 Studies suggest that up to 30% of individuals convicted of serious and recurrent offences may have untreated ADHD.8
This multidisciplinary consensus highlights the need for integration of ADHD services and close involvement of commissioning teams. The statements with the highest levels of agreement were used to derive recommendations on where priorities in care planning should lie (see Box 1).
Box 1: Recommendations from the consensus2
- A care coordinator should be nominated for each patient in order to ensure that access to services and local agencies is optimised
- ADHD professionals should seek to engage with other services, including education, primary care, specialist care, support services, commissioners, social care, and public health
- Wider education is needed to ensure that policy makers at national and local level are fully aware of the impact of untreated ADHD and the course of treatment over many years
- Adult services across the UK should be developed as a matter of urgency to avoid patients dropping out of treatment during the transitional period after paediatric care is finished at age 16 years (or 18 years if in full-time education)
- Primary care clinicians need to be educated to recognise the diagnostic signs of ADHD
- Specialist ADHD nurses should be recognised as a key resource in effective patient management. As a valuable resource, they should be well networked with all locality agencies and stakeholders
- Integrated care pathways for ADHD should be implemented to ensure appropriate assessment, diagnosis, and management of each case. Integrated care pathways will also offer the chance of improved outcome and resource optimisation
- Patient-centred care is paramount to successful management of ADHD and requires that the patient, family, and carer be educated regarding the condition and their choices
- Particular attention should be paid to the diagnosis and management of ADHD in children with learning difficulties
- Early diagnosis and effective management contribute significantly to outcome in patients with ADHD. Care must be taken to recognise the differing presentations of girls and boys and to avoid under-diagnosis of ADHD in girls
- Local authorities should be increasingly involved in the development of effective services for the management of ADHD.
- ADHD=attention deficit hyperactivity disorder; CCG=clinical commissioning group
The formation of the new NHS is an excellent opportunity for further development of ADHD services. The publication of the findings and recommendations from this consensus should prove a stimulus to people involved in commissioning services. General practitioners involved in commissioning will be able to use the new working arrangements in the NHS as an opportunity to develop ADHD services further, and to refer patients more readily into care pathways for specialist assessment. The cost of ADHD to individuals and to society as a whole is too high to ignore the need for prioritising services for ADHD.
- CCGs should look to develop a local integrated care pathway for ADHD based on those currently available and NICE guidance
- This local pathway should include and ensure specific arrangements for transition from paediatric to adult services
- There should be clear protocols agreed within the care pathway for prescribing of any required drugs and the responsibility for monitoring patients taking these drugs
- Shared-care agreements may be necessary between primary and specialist care for the continued prescribing of these specialist drugs
- CCGs should explore (via health and wellbeing boards) links with education, police, and probation services to ensure accurate identification of ADHD cases and referral pathways into specialist services
- CCGs should explore how a care coordinator for ADHD could be employed and how that post might be funded.
ADHD=attention deficit hyperactivity disorder; CCG=clinical commissioning group
- Ayyash H, Sankar S, Merriman H et al. Engagement of commissioners, primary and secondary care for developing successful ADHD services. Eur Child Adolesc Psychiatry 2013; 22 (1): 45–46.
- Ayyash H, Sankar S, Merriman H et al. Multidisciplinary consensus for the development of ADHD services: the way forward. Clinical Governance: An International J 2013; 18 (1): 30–38.
- National Institute for Health and Care Excellence. Attention deficit hyperactivity disorder: diagnosis and management of ADHD in children, young people and adults. Clinical Guideline 72. London: NICE, 2008. Available at: www.nice.org.uk/guidance/CG72
- Scottish Intercollegiate Guidelines Network. Management of attention deficit and hyperkinetic disorders in children and young people. SIGN 112. Edinburgh: SIGN, 2009. Available at: www.sign.ac.uk/pdf/sign112.pdf
- Polanczyk G, Silva Da Lima M, Horta B et al. The worldwide prevalence of ADHD: a systematic review and metaregression analysis. Am J Psychiatry 2007; 164: 942–948.
- Klasen H, Goodman R. Parents and GPs at cross purpose over hyperactivity. A qualitative study of possible barriers to treatment. Br J Gen Pract 2000; 50 (452): 199–202.
- Simon V, Czobor P, Balint S et al. Prevalence and correlates of adult attention-deficit hyperactivity disorder: meta-analysis. Br J Psych 2009; 194: 204–211.
- Kewley G. Attention deficit hyperactivity disorder: recognition, reality and resolution. London: David Fulton, 1999. G