Since March 2020, Academic Health Science Networks have supported the rollout of an evidence-based Attention Deficit Hyperactivity Disorder (ADHD) programme called Focus ADHD. Working closely with mental health trusts and community paediatric services, the programme seeks to improve the ADHD assessment offer for children and young people.
In the first year of the national programme, nearly 10,000 patients have benefitted across 46 hospital trusts in 2020/21.ADHD is a treatable disorder and affects approximately 3-5% of children and young people (ONS CYP prevalence survey 2017). If undiagnosed and/or untreated ADHD can have a significant impact on personal development.
In light of this ADHD awareness month, Professor Prathiba Chitsabesan, Consultant Child and Adolescent Psychiatrist, Pennine Care NHS Foundation Trust and NHS England Associate National Clinical Director for Children and Young People, shares her thoughts on discovering new perspectives in ADHD, the national Focus ADHD programme and importance of innovation in the restoration of NHS services.
In my role working as a community child and adolescent psychiatrist, I support children and young people (CYP) with a range of different needs including those with neurodevelopmental disorders such as ADHD. Working in this role has given me a greater awareness of the challenges that children and young people with ADHD face. I have also previously led the development of regional guidance for Greater Manchester (Delivering Effective Services for children and young people with ADHD). This was co-produced and supported by a range of different local stakeholders, recognising the importance of an integrated and holistic approach for children and young people, working across different agencies.
As the Associate National Clinical Director for Children and Young People at NHS England, I provide clinical advice and support the development and implementation of national policy and strategy. This includes addressing health inequalities and championing patient and public involvement and the patient voice. An important part of my role is supporting quality improvement and research into clinical practice. As a clinical academic, I have been involved with research studies highlighting the needs of young people in contact with the criminal justice system. Children and young people with ADHD are sadly over-represented in this vulnerable group, often facing barriers in accessing effective support.
The Focus ADHD programme supports the use of an objective assessment tool (QbTest) in the ADHD assessment pathway. As a clinician and the local service ADHD lead, I have been using QbTest to support my clinical practice in the assessment of young people with ADHD for the past seven years. QbTest (Qbtech Ltd) is a computer-administered task that measures the three core aspects of ADHD: attention, impulsivity and motor activity and takes about 15 -20 minutes to complete. Performance on the task is compared with a normative population group based on age group and gender. Practitioners use information from the QbTest report in conjunction with the clinical information (patient history, observation etc) to inform their decision whether the young person has ADHD or not. QbTest has been approved by the US Food and Drug Administration (FDA; Ref: K133382) to supplement standard clinical assessment and treatment follow-up. Several studies including an evaluation by the East Midlands AHSN have also demonstrated the benefits of using QbTest in increasing clinical confidence in diagnostic decisions and reducing the time to diagnosis.
I have found the QbTest alongside a clinical assessment helpful to formulate and understand a young person’s needs. This gives clinical confidence not only in the diagnosis or exclusion of ADHD but more importantly what support or treatment the young person may benefit from. Young people and parents/carers value the objectivity of the test and report benefits when shared with other family members or professionals involved in their care as it allows a shared understanding of the young person’s needs. I have also found the QbTest tool helpful for treatment optimisation and medication management by supporting shared decision making with children and young people and families.
Focus ADHD as a national programme
ADHD assessments in England are undertaken across services, in both paediatric services as well as Children’s Mental Health Services (CYPMH). The AHSN Network has worked to engage local systems taking a whole pathway approach and we have seen some impressive results across the sites involved.
The Focus ADHD programme has been positive in supporting local systems to:
- come together
- review their ADHD care pathways
- to look at their data and consider opportunities for improvement including the implementation of QbTest in their care pathway
- evaluate the impact of change including feedback from families and clinicians.
It has enabled local stakeholders and clinicians to be supported with their data, evaluate their assessment pathway, and understand a patient’s journey to inform where improvements and efficiencies can be made. Not only does the project support the development of a more efficient assessment pathway for young people with ADHD; but it also supports services to utilise quality improvement methodology, empowering clinicians to improve outcomes and the quality of care they deliver.
The importance of innovation in the restoration of NHS services
Sadly, we know that across health services there are significant pressures with young people waiting for assessment and treatment.
The coronavirus (COVID-19) pandemic has shown us the importance of innovation including the role of digital innovation. I think now more than ever we have to be innovative in how we deliver services to ensure we increase access to effective support for our local communities. The Focus ADHD programme supports quality improvement through the implementation of an evidence-based intervention (QbTest) to reduce time to diagnosis as well as supporting local system transformation. This provides an important opportunity to not only improve the experience of care for children and young people and families but also to maximise the use of clinical resources through the delivery of more effective and efficient care.
Upskilling and scaling innovation
Clinical leadership, co-production and empowering systems are all key enablers that support innovation. Other important factors include recognising and valuing the role of data to provide transparency and an organisational culture that is committed to supporting the drive for quality improvement in the care that it provides to its local communities.
AHSNs have a unique role in the implementation of innovation and research into clinical practice. A challenge for the NHS can be implementing innovation at scale across the country; particularly in supporting system transformation in care pathways such as ADHD which involves many different agencies and organisations locally. AHSNs work as an honest broker and can work with local systems to develop relationships that enable innovation to thrive.
Discovering new perspectives and reframing ADHD
This ADHD awareness month is about discovering new perspectives and reframing ADHD.
ADHD is a diverse disorder and not every young person or adult is the same. Many of the challenges young people and adults face may be exacerbated by societal perceptions and expectations. This is close to home for me as my daughter has Attention Deficit Disorder (ADD). She is funny and creative but struggles with the day to day demands of secondary school. The message I want to get across this ADHD awareness month is recognising that every young person or adult with ADHD or ADD is unique in their own right and whilst there might be areas they find challenging, we must also celebrate their uniqueness and strengths.