ADHD awareness hassoared among women in the UK in the past year, but waiting times and the dearth of clinical awareness are leaving people awaiting diagnosis in a perilous position, leading experts have warned.
Dr Max Davie, a consultant paediatrician and co-founder of ADHD UK, said that people talking openly about their diagnoses – such as the Loose Women presenter Nadia Sawalha – had led to more people seeking referrals for the condition.
A number of high-profile individuals have spoken about being diagnosed later in life in recent months – this week, the former Great British Bake Off host Sue Perkins, 53, revealed that she had been diagnosed with ADHD adding that “everything made sense” when she heard the news, while the comedian and actor Johnny Vegas also announced he had been diagnosed at the age of 52.
However, while awareness is increasing many trusts and private providers have shut waiting lists because of demand.
“I think it’s probably as big a year as we’ve ever had. We are seeing a lot more people from all walks of life seeking a diagnosis later in life, particularly women,” he said. “At the same time waiting lists have gone through the roof. NHS services have been swamped for a while and private providers are also closing their lists – there are wildly inadequate services for ADHD diagnosis, particularly for adults.”
Figures released by NHS Business Services Authority suggest demand is soaring. An estimated 170,000 identified patients were prescribed at least one drug for ADHD between July and September 2022 – a 20.4% increase from the 141,000 identified patients during the same period in 2021.
Dr Tony Lloyd, the chief executive of the ADHD foundation, said its own figures suggested a 400% increase in the number of adults seeking a diagnosis since 2020, adding that prescription volumes did not take account of those who do not use medication.
“ADHD remains significantly under-diagnosed and under-treated in the UK – at great cost to public services and to the individual and the workforce,” he said. Stigma around the condition, which the charity says affects one in 20 people in the UK, resulted in negative outcomes for individuals and high costs to the economy, he added. “Dismissing ADHD as a cultural construct and undeserving drain on finite NHS resources only adds to the enduring stigma and stereotyping of those with ADHD,” he said.
Jane Sedgwick-Müller, a senior teaching fellow in mental health nursing and an expert in ADHD in university students, said there had been a sharp increase in the number of university students seeking a diagnosis, adding that the social media platform TikTok had raised awareness.
But many were not getting the adjustments they needed to have a successful education, she said. “This is a marginalised population who are really disadvantaged within higher education. They need rapid access to treatment but are really struggling for recognition.”
Accurate waiting times for an ADHD diagnosis are difficult to establish because the current Nice guidelines do not recommend a maximum waiting time, and data on the number of people waiting for a diagnosis is not collected nationally.
Dr Ulrich Müller-Sedgwick, a consultant psychiatrist and the government of Jersey’s lead for adult neurodevelopmental pathways, said there was a “massive mismatch” between demand and capacity in the diagnosis and treatment of ADHD, with a severe lack of trained psychiatrists. “The NHS simply doesn’t have enough clinicians with appropriate training, experience and time to deliver good quality clinical work,” he said.
Government leadership and a whole-system approach to ADHD was vital but absent, said Davie. “But at the moment there isn’t a response, it’s an absolute non-response,” he said. “And pretty much any adverse outcome you can think of is more likely if you have untreated ADHD. As a population, we are dealing with lots of excess adversity, because we’re not getting to people quickly or effectively enough.”
A government spokesperson said the SEND (special educational needs and disability) and alternative provision green paper, published in March, would focus on improving outcomes for all children and young people with SEND, including those with neurodevelopmental conditions such as ADHD.
“We know how vital it is to have timely diagnoses for ADHD,” they said, adding that Nice guidelines on ADHD diagnosis and treatment were “clear” and that integrated care boards (ICBs) and NHS Trusts were responsible for commissioning services.