The NHS is not coping with ADHD. The numbers of people queueing up to be diagnosed surged during and after the Covid pandemic, and have become so large that waiting times stretch to years. NHS England knows it has a problem: in March it announced it is launching a taskforce to improve care. In February, six leading psychiatric experts from trusts around the country warned of a crisis.
Yet ADHD, is not a newly discovered condition, for all that it is now a TikTok sensation. Over the past 200 years, medics have noted children who are inattentive and over-excitable and pondered what could be done to help them.
Nor are the drugs new. Charles Bradley, director of a hospital in Rhode Island, stumbled across them in 1937 when trying to allay the headaches of patients whose cerebral fluid had been drained to give a clearer brain X-ray. The stimulant benzedrine was not much use for headaches, but he found it helped children to focus and improved their performance and behaviour in school.
The stress on the NHS follows a new awareness of the condition. Around 3 to 4% of adults in the UK have ADHD, according to Nice (National Institute for Health and Care Excellence) in 2023, and 5% of children. A study in the US, where figures have always been higher, found an increase in prevalence from 6% to over 10% between 1997 and 2016.
The charity ADHD UK says there are thought to be 2.6 million with the condition (adults and children) in the UK but 80% do not have a diagnosis. Just over 200,000 are getting medication, a small fraction of those with the condition. The argument that this is a behavioural problem which has been over-medicalised, with children drugged up to calm down naughtiness or improve their school grades, is hard to sustain.
“The medication is life-changing for many, myself included,” said Henry Shelford, CEO of ADHD UK. Taking it away, he says, “is similar to taking a wheelchair away from a person that needs it. Take that wheelchair away and the person doesn’t die. They cannot live in the same way; they can’t work in the same way. And that’s exactly the same for someone with ADHD having their medication removed.”
Darren O’Connor, 35, a computer software engineer who has an ADHD diagnosis, says the drugs turned his life around after he burned out working for a tech company. “ADHD medication saved my career and got me back on track,” he said. In his programming work, he needed to be focused for long periods. “That kind of focus is really hard to get but the medication helps you block out distractions.”
But O’Connor is now in danger of losing the job for want of the drugs he needs. Last September, the government issued a national patient safety alert, warning of shortages, particularly of the long-lasting drugs. The problem was worldwide and serious. “The supply disruption of these products is caused by a combination of manufacturing issues and an increased global demand. Other ADHD products remain available but cannot meet excessive increases in demand,” it said. The supply should be back between October and December, it said. It wasn’t. It still isn’t.
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There are five different types of medication that doctors can prescribe for ADHD. The most common for children is the stimulant methylphenidate, of which the best-known brand is Ritalin. It can be given as immediate release tablets two to three times a day, boosting a child’s focus in school, or as a slower release dose in the morning, which lasts all day. Lisdexamfetamine is also a stimulant, taken daily; dexamfetamine is similar, taken two to four times a day.
Atomoxetine is not a stimulant but an SNRI (selective noradrenaline reuptake inhibitor): it boosts the levels of noradrenaline, a chemical which passes messages between cells in the brain. It has been linked to some serious side-effects, such as suicidal thoughts and liver damage, so is given only if other drugs have not helped. The other non-stimulant drug given to children who have not been helped by methylphenidate or lisdexamfetamine is guanfacine, a daily tablet that acts on part of the brain to improve attention.
The stimulant drugs boost the central nervous system to increase levels of the reward hormones dopamine and noradrenaline that convey messages between neurons in the brain. Quite how it happens is still unclear, but memory and attention are improved and hyperactivity reduces.
The drugs are not a cure. Nowhere near. They are about managing ADHD symptoms and helping people to live in a society which is not set up for people who are neurodivergent. Nice does not advocate medicating children or adults immediately. Its 2018 guidance acknowledges that, despite all the literature about the positive effects of medication, “uncertainty still surrounds the quality of evidence and the balance of risks and benefits of long-term drug treatment for ADHD in children and young people”.
The first step is education and information on how to cope. Key to this are environmental changes, which include lighting, quietness, good nutrition, exercise and routine. While younger children may be amenable, it can be hard for the parents of teenagers to persuade them to eat well and exercise. For those who do not want drugs, there are therapies that have been shown to work, including cognitive behavioural therapy (CBT) and family therapy, but there can be long waiting lists on the NHS.
As with any drug, however, there are side-effects. There can be a slight rise in the resting heart rate and blood pressure levels. Other side-effects can include loss of appetite, increased aggression, headaches and stomach problems. Anecdotally some report feeling withdrawn and irritable when the medication wears off.
“To be honest, most people experience very little beyond dry mouth and appetite suppression,” says Dr Tony Lloyd, CEO of the ADHD Foundation, who has the condition. People who have a dual autistic and ADHD profile tend to report more side-effects. Only 13% of children with ADHD and 11% of adults are actually on these drugs, says Lloyd. “The reality is most people choose not to use medication – which of course is easier for adults who have more choice over lifestyle and occupations that play to their cognitive strengths. Children do not have that choice.”
Dr Ulrich Müller-Sedgwick, the Royal College of Psychiatrists’ ADHD champion, says that about half of the children diagnosed grow out of their symptoms. “They don’t meet the diagnostic threshold any more in adulthood and it’s probably because they learn strategies,” he said. They are a bit less hyperactive, although the inattentiveness often persists. He says it is really important for people to be assessed and taught about the drugs and followed-up by trained clinicians because the side-effects, while rare, are real. “There is a good reason why these are controlled drugs,” he said. Psychotic symptoms are very rare but they do occur in one or two per 1,000 patients.
Some studies have suggested children’s growth can slow while on the drugs, but the research is inconsistent and children tend to catch up during growth spurts in adolescence. Medication breaks can be helpful, either at weekends or in schoolthe holidays. Dr Müller-Sedgwick says studies suggest the drugs can continue working for five, six or even 20 years. After this another drug or combination can be explored.
Michelle Holland’s son Tom, now 13, has had both good and bad experiences on medication. He was diagnosed just before Covid. He was unhappy in reception and, after changing primary schools, teachers reported he was fidgeting in class. In year 3 he became deeply upset over his grandad’s death. The teacher told Holland: “He’s just not himself and he’s refusing to do work and crying and scribbling things on his book like ‘I failed, I may as well die’.” His mother, who works in the NHS, suspected ADHD and the GP agreed. He was quickly referred to a specialist, assessed and started on medication.
But it didn’t help. Tom fell behind and home schooling in lockdown was a disaster, so he was allowed back into class with just a few other pupils and a male teacher who was, said Holland, excellent. “He really brought him out of himself, gave him things to do if he was disruptive – it seemed as though he’d really learned about ADHD. He was superb.”
Tom met or exceeded all expectations in year 5 – and then, in a big noisy class the following year, went downhill again. He was put on a very high drug dose, but became aggressive, lost weight and wasn’t sleeping. Somehow he got through his Sats, and a few days later the nurse specialist suggested taking him off all the drugs and starting again. “He was a much happier child. The school said maybe he didn’t need all those medications which were strong, because he’s actually really calm now,” said Holland.
Tom is now on a very low dose of one of the original methylphenidate drugs, which is working for him and not in short supply. “It’s really hard work, it’s a constant battle, sort of juggling things, but he’s doing OK,” says Michelle.
The exact remit of the NHS England ADHD taskforce has not yet been revealed, although it is to bring together expertise from sectors including the NHS, education and justice. Certainly something needs to happen, and soon, to shorten queues for diagnosis and treatment. You can’t help thinking if this was a physical rather than a mental health issue, it would be considered a major scandal.
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