The mapping study aims to create a list of existing National Health Service (NHS) provision in the UK for young people with Attention Deficit Hyperactivity Disorder (ADHD) aged 18 and above. This is to inform future service provision and improve transition from children’s to adult’s services. This is in line with National Institute for Health and Care Excellence (NICE) guidelines on ‘Attention deficit hyperactivity disorder: diagnosis and management’ (2008, 2016).
This study is funded by the National Institute of Health Research and is being run in collaboration with the Royal College of Psychiatrists, and ADHD support groups: AADD-UK, ADHD foundation and UK Adult ADHD Network. We are asking three different groups of people about service provision in their area:
- Young people with ADHD, their parents/carers (service users),
- Clinicians who work with young people with ADHD (including psychiatrists, GPs and paediatricians),
- Clinical Commissioning Groups (the people who commission and pay for services)
Responses will be used as a foundation to create a map of existing services. The first round of the survey closed in December 2016 and will now be repeated in 2018 to track changes over time.
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Additional information: As we are a research group we cannot help with questions about your ADHD or finding support. If you have any clinical issues you would like to discuss please contact your local GP. If you would like additional information about ADHD please access the websites of our research partners, ADHD foundation, UK Adult ADHD Network and AADD-UK.
We had an incredible 1476 responses from the 2016 survey (including 804 clinicians, 488 service users and 184 clinical commissioning groups): all telling us what they know about ADHD services (if any) for young people aged 18+ in their area. From these responses 161 unique services have been identified, including 21 Specialist Adult ADHD services, 102 ‘other’ Mental Health Services, 24 Voluntary/Charitable organisations and 10 Private Providers.
Our team is now busy contacting these services to confirm details of what provision is available. This is still a work in progress, but once we have finalised the list we plan to publish this autumn, making it available online for all to use. Once it becomes available we want to engage with organisations that will help us disseminate it.
Thank you everyone for helping us in this important task. The survey will be repeated in 2018, so that we can find out how service provision changes over time.
We wanted to end the year with a huge 'Thank you' to all our partners for their ongoing support, including: ADHD foundation, UK Adult ADHD Network, AADD-UK; Royal College of Psychiatrists, British Association for Community Child Health (BACCH), Royal College of General Practitioners, Clinical Research Network South West Peninsula; NHS England and Clinical Commissioning Groups across England. Also the CATCh-uS parent advisory group and many colleagues, who have shared survey links with their networks, promoted CATCh-uS at ADHD training days and tweeted and re-tweeted about the study.
Thank you also to all the busy and committed individuals who have taken the time to complete the online survey. The results are incredible, with more than 1000 responses in total, all helping us to map local availability (or otherwise) of ADHD services for those with ADHD who are aged 18 and above. Response numbers by group (to 5th Dec 2016) are as follows:
- Young people with ADHD, their parents/carers (service users) – 359
- Clinicians who work with young people with ADHD – Psychiatrists 383, GPs 55, Paediatricians 27 and Allied Health Professionals 105
- Clinical Commissioning Groups – 154, over 70% of the 209 Clinical Commissioning Groups in England
Update: All surveys closed on 31st December, but we will be running the surveys again in 2018 to see what changes, if any, have taken place.
Responses from YP & Carers have been fantastic with over 350 replies to date. We have had over 370 responses from Clinicians, with a very good response rate from Psychiatrists. We would love to hear from more GPs and Paediatricians about adult ADHD service provision in their area.
We have had responses from just over 50% of the 209 Clinical Commissioning Groups in England about commissioned services for young adults with ADHD in their region. Work is beginning on compiling a full list of these.
Thank you to all our partners for their ongoing support with the survey, including:
- ADHD foundation, UK Adult ADHD Network, AADD-UK
- Royal College of Psychiatrists, British Association for Community Child Health (BACCH), Royal College of General Practitioners
- Clinical Commissioning Groups across England.
We have contacted The Royal College of Paediatricians, the British Association for Community Child Health (BACCH) and the George Still Forum (a group of paediatricians with an interest in ADHD), who have all agreed to send out the Mapping Survey to their members. Alongside this, a similar agreement has been made with the Royal College of General Practitioners. This means we will be able to gain information from a wider range of clinicians working with young people with ADHD, and hear from GPs and paediatricians in addition to psychiatrists, with perhaps a different range of knowledge and experience about services to better inform our study.
Our national survey of Clinical Commissioning Groups has now been launched. This is an important first step in the process of compiling a comprehensive list of services available in the UK for Young People with ADHD aged 18 and above.
Follow: #catchusADHD for updates.
All three surveys are ready for launch! After consultation with our partners we have final versions ready to go. A big thank you to the Royal College of Psychiatrists and ADHD support groups for all their assistance.
A special thank you to our CATCh-uS parent advisory group, who reviewed our questionnaire on 28th June. We really appreciate you giving up your time to inform and support this important study.