National survey reveals gaps in ADHD treatment for young adults

University of ExeterSep 2 2024

A national survey conducted as part of University of Exeter research has found huge variation in treatment for ADHD, highlighting the struggle many young adults face once they turn 18.

Researchers have warned that the current system is failing many young adults as they transition from children's to adult's services - suddenly finding themselves unable to access treatment because services do not link up effectively.

More than 750 people from across the country – including commissioners, healthcare professionals working in primary care, and people with lived experience of ADHD – completed the MAP National Survey, which highlights challenges that GPs face when prescribing ADHD medication.

ADHD affects up to seven per cent of children and up to five per cent of adults, with symptoms including patterns of hyperactivity, impulsivity and/or inattention which interfere with functioning in daily life. Failure to treat ADHD and gaps in treatment, especially as young people become adults, can have severe impacts for patients and families, increasing the risk of mental health crises and difficulties with work, education, and relationships. This failure also places additional pressure on those working in health services.

The survey found variations in "shared care" agreements between GPs, mental health specialists and patients – which need to be in place for GPs to be able to prescribe ADHD medications. This was a particular problem when young people move to adult mental health services, suggesting the current system lets down adolescents at a critical time in their lives. Current NICE guidelines recommend GPs prescribe medication for adult ADHD patients under a shared care agreement with adult mental health services.

However, the survey found that such agreements are not always easy to set up, with evidence suggesting that GPs may not feel sufficiently supported to prescribe in this way. Indeed, if appropriate support is not in place, some GPs may not prescribe ADHD medication due to concerns around insurance and liability. This can be a particular problem for patients with a private diagnosis of ADHD, and leaves GPs unable to provide effective care, and many patients without access to the medication they need.

Furthermore, more than 40 per cent of survey respondents reported waiting times of two years or more for an appointment with adult mental health services. This leaves GPs with the responsibility for providing care, but without the support they need to offer the best care for their patients at a crucial time in their lives. This can include removing access to medication, despite the treatment having been successful during childhood. Issues with access to treatment for ADHD are also worst for some underserved groups, such as young women, and young people leaving care, which is increasing health inequalities.

The survey results come just as NHS England has announced the establishment of a taskforce and a major review of ADHD services. As stated by NHS England: "People with ADHD deserve a caring and effective service from the NHS and wider society. We know there is more to do, but we do not underestimate the complexity and challenges in realising this ambition."

Our findings highlight the need for a coordinated approach to address problems that lead to a postcode lottery for patients trying to access treatment for ADHD. GPs and other primary care professionals really need better support so that they can provide shared care prescribing of ADHD medication in line with UK guidelines.

We know that failing to treat ADHD can have a huge impact. Turning 18 is often a crucial and sensitive time in life, and our research shows that lack of treatment at this time can be particularly damaging for young people who are learning to self-manage their health needs, at the same time as perhaps sitting important exams, leaving home for the first time, and embarking on careers or university study.

We welcome the establishment of the NHS England taskforce and is a much-needed step towards better outcomes for people with ADHD."

Dr. Anna Price, Senior Research Fellow, University of Exeter

University of Exeter experts have recently established a Science of ADHD and Neurodevelopment collaboration, working together with people who are experts by experience, and healthcare providers. The collaboration aims to develop solutions, such as curated digital interventions and standardized shared care agreement templates, to help people with ADHD to thrive.

The MAP National Survey was conducted as part of the MAP research project, funded by a National Institute for Health and Care Research (NIHR) Three Research Schools' Mental Health Research Fellowship. Support for primary care prescribing for adult ADHD in England: national survey is published in British Journal of General Practice. A related article, which explored qualitative experiences of primary care provision for young people with ADHD across England, is published here: https://bjgp.org/content/early/2024/02/05/BJGP.2023.0626

CASE STUDY:

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A 24 year old Iranian woman with ADHD, who sought a private diagnosis at the age of 21 after waiting for over a year and a half for NHS support. Barriers to diagnosis, and extended delays in accessing medication have made managing her health difficult - and she has had to take a year out from her university studies due to the severe impact of her unmanaged symptoms. She is currently going through a process of getting the right dosage for ADHD medication privately and hopes her GP will be able to continue to prescribe these medications once the right dosage has been found.