From breakthrough singer Lola Young describing her number one hit Messy as an “ADHD anthem” to billions of hits on TikTok alone for the condition, it seems a whole generation is finally recognising symptoms they have struggled with all their lives.
Twenty-four-year-old singer-songwriter Young has told of how she has “very severe” attention deficit hyperactivity disorder (ADHD) that is “hard” to live with.
Her experiences are widely echoed on social media, where discussion of ADHD has spread like wildfire as people share videos on everything from how to recognise symptoms to getting a diagnosis.
But with this better understanding and awareness has come rocketing pressure on NHS mental health services.
Around 5% of children and teenagers worldwide are impacted by ADHD, making it a major health concern. With backlogs for assessments seemingly only getting longer, it is feared the pressure to clear service bottlenecks has led to unreliable assessments.
In December, psychologist professor Susan Young and her colleagues on the executive committee of the UK ADHD Partnership issued a “consensus statement” published in Neuropsychiatric Disease and Treatment. The statement outlined the need for a new quality assurance standard for assessments of teenagers and children.
Professor Young and her colleagues say the standard would “promote evidence-based, high-quality assessments, improve diagnostic accuracy and reduce the risks of overdiagnosis, misdiagnosis and underdiagnosis”.
The work on a new quality assurance standard comes after a BBC Panorama investigation raised concerns about the ADHD diagnosis. The documentary team spoke to patients and whistleblowers about poor quality assessments at private clinics.
The NHS has been referring patients to private clinics to reduce waiting times, and the trend has raised concerns about service quality. In May 2023, three private clinics diagnosed undercover reporter Rory Carson with ADHD, while an NHS assessment said he did not have the condition.
The programme suggested psychiatrists were handing out powerful drugs on the basis of unreliable online assessments. All three assessments were completed via video calls. The programme suggested private clinics were using only limited mental health assessments.
The programme prompted a heavy backlash from charities like the ADHD Foundation. They accused the programme-makers of sensationalism and failing to see the bigger picture – the vast unmet needs of people trapped in lengthy NHS waiting lists.
But, it seems, some of the concerns raised are echoed in the work of professor Young and her colleagues.
Director of Psychology Services Limited professor Young and her UK ADHD Partnership colleagues say the ADHD assessment quality assurance standard for children and teenagers must rely on “multi-source information”.
This should inform assessments of the person’s developmental, physical and mental health history and the family, educational and social background. Also, the standard maintains that assessments of core ADHD symptoms should include “specific developmentally appropriate examples of associated difficulties and impairments“.
In addition, any other neuropsychiatric and physical health problems should also be assessed and identified.
In a video posted to YouTube on the consensus statement, Professor Young highlights how “there are such long waiting lists here, and there’s so much missed and misdiagnosis”.
She added that any support they could give about the proper protocols for a “comprehensive and quality assessment, diagnostic assessment and report, is very much needed”.
NHS waiting lists for ADHD assessments vary widely, but a BBC investigation last year found many areas would take at least eight years to clear their backlogs for adults.
In October 2023, Charity ADHD UK suggested that up to 131,000 people were waiting for an NHS assessment, which is about 5% of the estimated 2.6 million people in the UK thought to have the condition.
Professor Young and her colleagues say the world’s two major diagnostic manuals, the Diagnostic and Statistical Manual of Mental Disorders, text revision (DSM-V-TR) and the International Classification of Diseases (ICD-11) provide the criteria for diagnosing the condition. However, the consensus statement adds that they offer only “limited guidance” on how to arrive at an accurate diagnosis.
Also, while the National Institute of Health and Care Excellence offers guidelines for diagnosing ADHD, they do not “specify detailed procedures for clinical practice“.
Young and her colleagues write, “This gap in guidance leaves practitioners without clear direction on how to conduct assessments effectively.”
And the shortcomings of the current assessment system do not just apply to children and teenagers.
Four months before Young and her colleagues shared their concerns, another group of ADHD experts wrote a consensus statement calling for a very similar new quality assurance standard for adults.
Led by psychiatrist Dr Marios Adamou of the South West Yorkshire Partnership NHS Foundation Trust, the medics again cited the lack of proper guidance around good quality assessments.
Adamou and his colleagues on the UK Adult ADHD Network executive committee wrote of how it could lead to “variation” in the quality and reliability of ADHD assessments.
“Poor quality assessments may not be accepted as valid indicators of the presence of ADHD by other clinicians or services, resulting in wasteful reassessments and delays in providing treatment,” they added.
MSP for Edinburgh Southern Daniel Johnson says his life has been transformed for the better by the ADHD diagnosis he received in 2013 and the medication he takes to manage the condition.
Labour MSP Johnson said while there are very reputable private practitioners working in this area, it is clear that assessments should be carried out by experienced psychiatrists.
He added, “Unfortunately, the rise of assessments being offered by providers that do not take the time or utilise the in-depth expertise provided by psychiatric assessment has led to a confusing situation, both for those seeking help and GPs approached for shared care.
“We need clear, robust standards, greater capacity for assessment and clear protocols for shared care following a diagnosis.”
Chief executive of the Brain Charity, Pippa Sargent, said while the consensus statements highlighted important discussions, “excessive gatekeeping” could make accessibility in the NHS worse.
She added, “ADHD remains underdiagnosed in key populations, and any reforms must focus on equity and accessibility.”
In a statement, the Department for Health and Social Care said NHS England’s ADHD task force would bring together expertise from the NHS and the education and justice systems to “better understand the challenges affecting those with ADHD, including timely access to services and support”.
