The Children and adolescents with ADHD in transition between children’s services and adult services (CATCh-uS) project was funded by the National Institute of Health Research (NIHR) and ran until October 2018.
Attention deficit hyperactivity disorder (ADHD) is a common condition that affects children and adolescents and can continue into adulthood for some. Children with ADHD generally have problems paying attention or concentrating. They cannot seem to follow directions and are easily bored or frustrated with tasks. These can impact on a child’s ability to function in school and at home.
Once considered to be a condition restricted to childhood, there is clear evidence that ADHD persists into adulthood for many young people. Adults with ADHD may have difficulty with time-management, organisational skills, goal setting, and employment. They may also have problems with relationships, self-esteem, and addictions. It is now recognised as a long term condition.
Project aims and objectives
This project focused on what happens to young people with Attention Deficit Hyperactivity Disorder (ADHD) when they are too old to stay with children’s services. We know little about how many areas have specialist services for adults with ADHD and how many young people need to move to them when they are too old for children’s services. Until the late 20th century, ADHD was a controversial diagnosis. Once generally accepted, it was still seen as a developmental disorder of children, and so mental health services for adults are not set up to manage young adults who have ADHD and continue to want support to cope with their lives.
CATCh-uS aimed to establish how many young people with ADHD are in need of services for ADHD as adults, and investigate young people’s, parents’ and practitioners’ views about the transition process. It set out to map available adult ADHD services around the country. The study was developed with the help of parents of a child with ADHD from the Peninsula Childhood Disability Research Unit (PenCRU) Family Faculty.
This project consisted of 3 streams:
1. Surveillance study
The surveillance study ran in parallel through the Child and Adolescent Psychiatry Surveillance System (CAPSS) and the British Paediatric Surveillance Unit (BPSU). Each month these units mailed a tick box response card to all consultant paediatricians and child psychiatrists in the UK and ROI. Clinicians were asked to report young people with ADHD on medication who are within 6 months of the age-boundary for discharge from their children’s service. The project team followed up with these young people nine months later to find out about the process of transfer to a new service provider and their care pathway. View the results on the surveillance study webpage.
2. Qualitative study
The CATCh-uS team have conducted interviews with key stakeholders to explore their views and experiences of the transfer (a change of provider) and transition (the quality and experience of the process of moving on from children’s services) of young people with ADHD between children’s and adult services. This included workshops with young people at two secondary schools in Exeter.
- service providers working with young people with ADHD in children and adult services, e.g. paediatricians and psychiatrists;
- young people, including those attending children’s services prior to age of maximal drop out (14-16 years old), those who recently successfully transferred directly to adult services from their children’s services, and those who dropped out and re-entered the system in their early- to mid-twenties; and
- parents of a child with ADHD.
The project team analysed findings from the completed interviews. Find out more on the qualitative study webpage.
3. Mapping study
The mapping study aimed to map the variation in NHS Adolescent and Mental Health Services (AMHS) available for young people with ADHD. It combined information from the surveillance study and qualitative interviews with email/postal surveys of service commissioners, service providers and key service user groups for young adults with ADHD. All were asked whether their area has a service for adults with ADHD, and if so, did it have staff with dedicated time to work with these young people and what does it offer them?
This study was run in collaboration with the Royal College of Psychiatrists, and ADHD support groups: AADD-UK, ADHD Foundation and UK Adult ADHD Network. View the latest updates on the mapping study webpage.
2018 service map
More than 2500 people with ADHD, parents, carers, clinicians and commissioners helped the team map services for adults with Attention Deficit Hyperactivity Disorder (ADHD) in the UK. Full findings will be made available. In the meantime please follow us on Twitter #catchusADHD for updates.
Browse map for services in your region:
The team plan to add an additional element to the qualitative study. In addition to interviewing clinicians working in children’s and adult services, they will also interview GPs, with a particular focus on training needs in addition to their experience of adults with ADHD. Current data suggest that GPs play a vital role in the transition; particularly when transition goes wrong (long period between being discharged from children's services and first appointment in AMHS) or the young person is discharged or drops out close to the age boundary of the children’s service.
Find out more
- MBCT-YP: Mindfulness-Based Cognitive Therapy to prevent relapse in young people
- The MYRIAD Project: Mindfulness and Resilience in Adolescence
- Self-harm and Suicide in Schools
Gwernan-Jones R, Moore D, Cooper P, Russell A, Richardson M, Rogers M, Thompson-Coon J, Stein K, Ford T Garside R. A systematic review and synthesis of qualitative research: the influence of school context on symptoms of Attention Deficit Hyperactivity Disorder. Emotional and Behavioural Difficulties, 21(1), 83-100.
Eke, H., et al. (2018). "Review: Transition from children's to adult services: a review of guidelines and protocols for young people with ADHD in England." Child and Adolescent Mental Health.
Price, A., et al. (2018). "Experiences of healthcare transitions for young people with ADHD: a systematic review of qualitative research." Journal of Child and Adolescent Mental Health.