A national survey conducted as part of University of Exeter research has found significant variation in the treatment of ADHD, underscoring the challenges many young adults encounter once they reach 18.

Researchers have cautioned that the current system is failing many young adults as they transition from children’s to adult services. They suddenly find themselves unable to access treatment because services are not effectively linked up.

Over 750 individuals from around the country, including commissioners, healthcare professionals in primary care, and individuals with lived experience of ADHD, participated in the MAP National Survey. The survey sheds light on the challenges that GPs encounter when prescribing ADHD medication.

ADHD affects up to seven per cent of children and up to five per cent of adults. Symptoms include patterns of hyperactivity, impulsivity, and/or inattention, which interfere with daily functioning. Failing to treat ADHD and gaps in treatment, especially as young people grow into adults, can have severe impacts on patients and families. This increases the risk of mental health crises and difficulties with work, education, and relationships, adding pressure on health services.

The survey revealed differences in “shared care” agreements between GPs, mental health specialists, and patients, which are required for GPs to prescribe ADHD medications. This issue was especially problematic when young people transitioned to adult mental health services, indicating that the current system fails adolescents at a crucial stage in their lives. Current NICE guidelines advise GPs to prescribe medication for adult ADHD patients under a shared care agreement with adult mental health services.

The survey revealed that setting up agreements for prescribing ADHD medication may not always be easy. Evidence suggests that GPs may not feel well-supported to prescribe in this manner. If the appropriate support is not in place, some GPs may choose not to prescribe ADHD medication due to concerns about insurance and liability. This can be especially problematic for patients with a private ADHD diagnosis, leaving GPs unable to provide effective care and many patients without access to the medication they need.

Moreover, over 40 per cent of survey respondents reported waiting for two years or more for an appointment with adult mental health services. This places the responsibility of providing care on GPs without the necessary support to offer the best care for their patients during a critical time in their lives. This can involve restricting access to medication, even if the treatment was successful during childhood. Furthermore, access to treatment for ADHD is particularly challenging for certain underserved groups, such as young women and young people leaving care, leading to increased health disparities.

The survey results come just as NHS England has announced the establishment of a task force and a major review of ADHD services. As NHS England states, “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 realizing this ambition.”

Dr Anna Price, Senior Research Fellow at the University of Exeter, emphasized the importance of a coordinated approach to address the disparities that create a postcode lottery for patients seeking treatment for ADHD. She stressed the need for improved support for GPs and other primary care professionals so they can offer shared care prescribing of ADHD medication in accordance 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, which is a much-needed step towards better outcomes for people with ADHD.”

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

Research conducted by the University of Southampton indicates that while medications are important for improving the quality of life for individuals with ADHD, the authors suggest that additional support is necessary alongside medications.

The findings, published online on 8 August 2024 in The Journal of the American Academy of Child and Adolescent Psychiatry, highlight the potential impact of shortages of certain ADHD medications.

“It is deeply concerning to think of the impact on individuals who cannot access their medication due to supply shortages or for other reasons,” Professor Samuele Cortese from the University of Southampton, the senior author on the paper, expressed.

Attention-Deficit/Hyperactivity Disorder (ADHD) is characterized by symptoms of inattention, hyperactivity, and impulsivity, which can have negative effects on various aspects of life such as social interactions, work, education, and daily tasks.

“People with ADHD report lower quality of life in areas such as work productivity, social and family life, and self-esteem, compared to their neurotypical peers,” stated Dr. Alessio Bellato, a lecturer in Psychology at the University of Southampton and the lead author of the paper.

“This study demonstrates that medications play a crucial role in enhancing the quality of life for individuals with the condition.”

The researchers conducted the first systematic review and meta-analysis to investigate the effects of stimulant (amphetamines and methylphenidate) and non-stimulant (atomoxetine) drugs for ADHD on the quality of life.

They included 17 placebo-controlled trials, encompassing over five thousand participants in the analysis. Trials were drawn from the MED-ADHD dataset the largest dataset of trials of ADHD medication, set up by Professor Cortese and international collaborators.

Both stimulant and non-stimulant drugs were significantly more effective in improving quality of life than placebo. However, the study also found that while the effects of these drugs on the core ADHD symptoms are usually medium to high, the impact on quality of life was in the small-to-medium range.

Professor David Coghill from the University of Melbourne, a co-author on the paper, added: “This disparity shows that, for most people, targeting core symptoms through medication alone is unlikely to counter the impact of ADHD on quality of life. More research is needed to find out whether combining medication with other approaches can lead to further improvements in well-being and what types of support might be most effective in situations where medication is not available.”

“More research is also needed to better understand how these medications affect quality of life,” says Dr Bellato. “It could be that reducing the core symptoms of ADHD (inattention, hyperactivity, impulsivity) leads to more efficient task management and this results in better academic and professional outcomes. Medications may also help stabilise emotional dysregulation, promoting emotional well-being and higher self-esteem.”

“Considering that ADHD medication might not be acceptable, effective, or well tolerated for everyone with ADHD, more research is needed to evaluate alternative approaches, including psychological interventions.”