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 focuses 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 aims 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 will also map currently available adult ADHD services around the country. The study was developed with the help of parents of a child with ADHD from the Peninsula Cerebra Research Unit (PenCRU) Family Faculty.
This project consists of 3 streams:
1. Surveillance study
The surveillance study is running in parallel through the Child and Adolescent Psychiatry Surveillance System (CAPSS) and the British Paediatric Surveillance Unit (BPSU). Each month these units mail a tick box response card to all consultant paediatricians and child psychiatrists in the UK and ROI. Clinicians are 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 will then follow 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 latest news 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 are analysing findings from the completed interviews. Information from their analysis will inform the next interviewing period, which is due to start in April 2017. Find out more on the qualitative study webpage.
3. Mapping study
The mapping study aims to map the variation in NHS Adolescent and Mental Health Services (AMHS) available for young people with ADHD. It will combine 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 will be asked whether their area has a service for adults with ADHD, and if so, does it have staff with dedicated time to work with these young people and what does it offer them?
This study is being 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.
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.