Bex Whitley had been at her London PR job for a year, when, one afternoon, her manager pulled her to one side and asked to have a chat. He gently told her that, after managing her for a while, he wondered if she had considered that she might have ADHD.
“He said that people at work had been questioning my communication style, and he’d also seen that I was struggling to explain myself in a way that was easy to understand,” Bex, who lives in central London, says when we chat over the phone. “He had family who had ADHD, so he knew the symptoms.”
Bex had been harbouring suspicions that she might have ADHD for a while, but it was the first time anyone had openly spoken to her about it. After her chat with her boss, she phoned her GP to explain her symptoms, and was put on a waiting list for assessment.
“They didn’t say exactly how long it would be, until I heard back, but they did say it would be a year minimum,” Bex says.
That was four years ago. It was only last month that Bex finally heard back from a doctor, who processed her assessment and gave her an official ADHD diagnosis. But, in the interim period, Bex’s mental health had begun to spiral. Two years after that initial phone call, she suffered what she describes as an ADHD-triggered mental breakdown, and was eventually signed off from work.
She is far from alone. Last month, a BBC investigation found that many areas of the UK have such long backlogs for adult ADHD assessments that it would take at least eight years to clear them. The investigation suggests there are currently at least 196,000 adults on waiting lists across the UK.
ADHD (attention deficit hyperactivity disorder) is a neurodevelopmental condition that affects people’s behaviour. It is characterised by a pattern of inattention, hyperactivity, and impulsivity that interferes with functioning. It is often diagnosed in childhood, but adults are increasingly discovering symptoms that they believe have gone undiagnosed.
Since 2019, there has been a 51 per cent increase in prescriptions for ADHD medications such as methylphenidate and lisdexamfetamine, according to the Nuffield Trust. But it has still not caught up with demand. In April, the trust said 24 per cent of patients referred for ADHD in England were having to wait one to two years for an assessment. Rising demand fuelled by increased awareness of ADHD symptoms, coupled with limited capacity, has contributed to the backlogs, with three trusts having closed their waiting lists completely.
Dr Ulrich Müller-Sedgwick, ADHD Champion at the Royal College of Psychiatrists, has seen this first hand. “We’ve seen a significant increase in the number of people coming forward for ADHD support in recent years,” he says. “There are many reasons for this, including greater public awareness, improved recognition of ADHD in women and the pandemic which exacerbated many people’s symptoms.”
On Bex's part it was a change in work circumstances which exacerbated her symptoms and it proved detrimental to her health. "I got a new job, and they literally could not deal with my ADHD,” she says. “It got worse the worse my ADHD got. They wanted me to work in a strict rigid way, and weren’t understanding. I had proof of over-performance, reaching my targets, but they would constantly criticise my communication and things that were just my ADHD. My manager disregarded that I needed her communication to be tailored to me even more than most people would.
“Eventually, I got signed off from work, for weeks. I felt so misunderstood, and too anxious to say anything to anyone.”
Even though Bex now has a formal diagnosis, she still faces a further unknown wait to see a psychiatrist to start the medication process. Not everyone with ADHD needs or wants medication – it can also be treated by therapy – but the NHS generally recommends a combination of both.
Earlier this year, the BBC found that, on top of years-long waiting lists, thousands of people with ADHD have been unable to get prescribed medication amid a global supply shortage. The report found that this has created an unregulated online black market stacked with medication which high street chemists are struggling to stock. Psychiatrists have warned some of the drugs could contain other potentially harmful chemicals.
Although she didn’t turn to the black market, 24-year-old school counsellor Izzy Moore is one of thousands still waiting to start the ADHD medication process. After making an initial phone call to her GP describing her ADHD symptoms back in 2019, she has been waiting five years for treatment. Like many people, she has struggled all her life with symptoms of ADHD.
“School was awful for me,” Izzy, who is from Warwickshire but now lives in north London, tells me. “I would always forget stuff, teachers would tell me I was being difficult. In sixth form, they even tried to kick me out just because I kept forgetting to wear the right uniform. I was working hard, but now I know I just had ADHD.”
In 2018, when Izzy started her undergraduate degree at Edinburgh University, she found it even more difficult to manage her symptoms.
“It was completely unstructured, and all self-motivated – I just couldn’t deal with it,” she says. Her mental health started to spiral, and she fell into addiction. “There was access to a lot of drugs, and I started smoking a lot of weed just to calm my mind down a bit. I was also taking a lot of study drugs [which are not legal to supply to anyone without a prescription], it was just a terrible time. I struggled a lot with addiction.”
After being diagnosed with depression, it was her sister who suggested that Izzy also might have ADHD. She spoke to a GP, who put her on a waiting list for an assessment.
“The first [doctor] I saw, I was visibly struggling,” she says. “I was shaking and wriggling much. Anyone who knows anything about mental health, within five minutes [they] could have diagnosed me with ADHD.”
But, despite what Izzy thought were obvious symptoms, years went by, and she heard nothing from her GP. Part of the problem, Izzy discovered, was that, like many young people, she had moved house twice since her initial consultation, and was put on a new waiting list each time.
“I moved from Edinburgh to Warwickshire, and I was put on a new waiting list, and then I moved to London and they put me on another one,” she says. “It was like, what do you want me to do, stay in the same place for six years?”
During that period, Izzy struggled both at work and in her personal life. “I’ve gotten into really difficult situations – I’ve crashed my car three times, I fell down some stairs, had a traumatic brain injury and broke my collarbone,” she says. “I just can’t see danger, that’s one of the symptoms of ADHD”.
“I’m always behind at work, I’m supposed to finish at 3.45pm but I work until 6pm. When you don’t know why you can’t function it shatters your self-esteem. Struggling with addiction also really made me think badly of myself. I’ve really had to build myself back up.”
Izzy was also frustrated at the emerging two-tier system of ADHD diagnosis, in which those who can afford private healthcare are able to pay for a diagnosis, while others have to suffer for years.
“I didn’t have the means to pay for a private diagnosis, I don’t come from a family who could afford to help me”, says Izzy. “I know people who have paid for it, and it’s just so unfair.”
Last month, after repeated phone calls to her GP, Izzy finally got a diagnosis, but was told that she has to wait a further eight months for medication.
“Even though I still have longer to wait, it felt like such a huge relief,” she says. “At least now can use my diagnosis to help me with getting support at work, and it’s really validating.”
For the 2.6 million people in the UK with ADHD, these backlogs can be devastating, and point to a broken system.
“Waiting years for an ADHD assessment can be incredibly challenging if you're struggling with the symptoms daily,” says Dr Elena Touroni, a consultant psychologist and co-founder of The Chelsea Psychology Clinic. “It can lead to increased frustration, low self-esteem, and deteriorating mental health. It affects your education, job performance, and personal relationships, making it harder to live a fulfilling life.”
There have also been reports of cases where patients have been told by a GP that they have been put on a waiting list, only to discover years later that they never even referred in the first place.
Waiting years for an ADHD assessment can lead to increased frustration, low self-esteem, and deteriorating mental health. It affects your education, job performance, and personal relationships
This is exactly what happened to 25-year-old Lonika Manektalla from Ealing. After phoning her GP in 2021 with symptoms of ADHD and being told she was on a waiting list. “I just thought with Covid, and the NHS waiting lists, I’m not going to pester them,” she tells me.
But after hearing nothing for a year, Lonika finally decided to call back. “They told me that the GP I spoke to didn’t work there anymore, but they’d check for me. And then they said the referral had never even been sent. All that time I had been waiting, I wasn’t even on the list.
The experience has put Lonika off trying to get a diagnosis altogether. “I’ve kind of given up to be honest,” she says. “It was already hard enough to make that first phone call in the first place, I was literally in tears. It’s like, do I really want to go through all of that again?”
Despite the backlogs, practitioners are keen for those with ADHD symptoms not to be put off seeking diagnosis.
“Having a formal diagnosis of ADHD can be crucial in providing clarity and validation, helping you understand that your struggles are not just in your head but part of a recognised condition,” says Dr Elena. “Not only can you access medication and therapy, but in educational and workplace settings, a diagnosis allows for necessary accommodations and support, making it easier for you to thrive.”
In May, NHS England announced it would be launching an ADHD taskforce to better understand the challenges affecting those with ADHD and help provide a joined-up approach in response to concerns around rising demand.
“The [taskforce] has the potential to bring together cross-sector expertise and provide joined-up solutions for people living with ADHD,” says Dr Ulrich. But, as with many of the NHS's problems, the solution ultimately comes down to funding.
“It will need to be supported by targeted investment," Dr Ulrich says. "[That will] help expand ADHD services and increase their capacity to deliver timely assessments and follow-up care.”
It is clear, though, that this new service will be of vital importance to Izzy, Bex, Lonika and the thousands of people across the country waiting for what is often a life-changing ADHD diagnosis.
