TThe NHS cannot deal with ADHD. The number of people queuing for diagnosis has skyrocketed during and after the Covid pandemic and has become so long that waiting times have stretched into years. NHS England knows it has a problem: in March it announced it was launching a taskforce to improve care. In February, six leading psychiatric experts from trusts across the country met warned of a crisis.
Yet ADHD is not a newly discovered condition, but it is now a TikTok sensation. Over the past 200 years, clinicians have noticed children who are inattentive and overstimulated and wondered what could be done to help them.
The drugs are not new either. Charles Bradley, director of a hospital in Rhode Island, came across them in 1937 when he was trying to soothe the headaches of patients who had had their cerebrospinal fluid drained to create a clearer X-ray of the brain. The stimulant Benzedrine did not help much with headaches, but he found that it helped children concentrate and improved their performance and behavior at school.
The pressure on the NHS follows new awareness of the condition. According to Nice (National Institute for Health and Care Excellence), by 2023 around 3 to 4% of adults in Britain will have ADHD, and 5% of children. a study in the USwhere the figures have always been higher, we noted an increase in prevalence from 6% to over 10% between 1997 and 2016.
The charity ADHD UK says there are an estimated 2.6 million people with the condition (adults and children) in Britain, but 80% are undiagnosed. Just over 200,000 people receive medication, a small proportion of those with the condition. The argument that this is a behavioral problem that has been over-medicalized, with children being drugged to calm mischievous behavior or improve their academic performance, is difficult to sustain.
“The medication is life-changing for many, including myself,” said Henry Shelford, CEO of ADHD UK. Taking it away, he says, “is akin to taking a wheelchair away from someone who needs it. Take away that wheelchair and the person doesn’t die. They cannot live the same way; they cannot work in the same way. And that’s exactly the same for someone with ADHD who has their medication removed.”
Darren O’Connor, 35, a computer software engineer with an ADHD diagnosis, says the drugs changed his life after he was burned out at a tech company. “ADHD medication saved my career and got me back on track,” he said. His programming work required him to be focused for a long time. “That kind of focus is very difficult to get, but the medication helps you block out distractions.”
But O’Connor is now in danger of losing his job due to lack of the medicine he needs. Last September, the government issued a national patient safety alert, warning of shortages, especially of long-acting drugs. The problem was global and serious. “The supply disruption of these products is caused by a combination of production issues and increased global demand. Other ADHD products remain available but cannot meet the excessive increase in demand,” the report said. Supply should return between October and December, the report said. It wasn’t. It still isn’t.
THere are five different types of medications that doctors can prescribe for ADHD. The most common drug for children is the stimulant methylphenidate, of which Ritalin is the best-known brand. It can be given two to three times a day as immediate-release tablets, which increase a child’s focus at school, or as a slower-release dose in the morning, which lasts throughout the day. Lisdexamfetamine is also a stimulant when taken daily; dexamphetamine is similar and is taken two to four times a day.
Atomoxetine is not a stimulant but an SNRI (selective norepinephrine reuptake inhibitor): it increases levels of norepinephrine, a chemical that transmits messages between cells in the brain. It has been linked to a number of serious side effects, such as suicidal thoughts and liver damage, and is therefore only given when other medications have not helped. The other non-stimulant drug given to children not helped by methylphenidate or lisdexamfetamine is guanfacine, a daily tablet that acts on a part of the brain to improve attention.
The stimulant drugs stimulate the central nervous system to increase levels of the reward hormones dopamine and norepinephrine, which transmit messages between neurons in the brain. It is still unclear exactly how it happens, but memory and attention are improved and hyperactivity decreases.
The medications are not a cure. Not around. They are about managing ADHD symptoms and helping people live in a society that is not designed for people who are neurodivergent. Nice does not advocate immediately giving children or adults medication. The 2018 guidelines recognize that, despite all the literature on the positive effects of medication, “there remains uncertainty about the quality of evidence and the balance of risks and benefits of long-term drug treatment of ADHD in children and adolescents.”
The first step is education and information about how to deal with this. Key to this are environmental changes including lighting, rest, good nutrition, exercise and routine. While younger children may qualify, it can be difficult for parents of teens to convince them to eat right and exercise. For those who don’t want medication, there are therapies that have been shown to work, including cognitive behavioral therapy (CBT) and family therapy, but there can be long waiting lists on the NHS.
However, as with any drug, there are side effects. There may be a slight increase in resting heart rate and blood pressure. Other side effects may include loss of appetite, increased aggression, headaches and stomach problems. Anecdotally, some report feeling withdrawn and irritable as the medication wears off.
“To be honest, most people experience very little other than dry mouth and appetite suppression,” says Dr Tony Lloyd, CEO of the ADHD Foundation, who has the condition. People with a dual autistic and ADHD profile usually report more side effects. Only 13% of children with ADHD and 11% of adults actually use these medications, Lloyd says. “The reality is that most people choose not to take medication – which is of course easier for adults who have more choice about lifestyle and occupations that cater to their cognitive abilities. Children don’t have that choice.”
Dr. Ulrich Müller-Sedgwick, ADHD champion from the Royal College of Psychiatrists, says around half of diagnosed children grow out of their symptoms. “They no longer meet the diagnostic threshold when they reach adulthood, and that’s probably because they learn strategies,” he said. They are slightly less hyperactive, although the inattention often persists. He says it’s very important that people are assessed and educated about the drugs and monitored by trained doctors because the side effects, while rare, are real. “There’s a good reason why these are controlled drugs,” he said. Psychotic symptoms are very rare, but occur in one or two per 1,000 patients.
Some research has suggested that children’s growth may slow when they take medications, but the research is inconsistent and children tend to catch up during growth spurts in adolescence. Medication breaks can be helpful, both at weekends and during school holidays. Dr. Müller-Sedgwick says research shows the drugs can continue to work for five, six or even 20 years. After this, another drug or combination can be investigated.
Michelle Holland’s son Tom, now 13, has had both good and bad experiences with medication. He was diagnosed just before Covid. He was not happy with the reception, and after he changed primary schools, teachers reported that he was fidgeting in class. In year 3 he became deeply upset about his grandfather’s death. The teacher told Holland: “He’s just not himself and he refuses to do his work and cries and scribbles things in his book like ‘I failed, I might as well die’.” His mother, who works for the NHS, suspected ADHD and the GP agreed. He was quickly referred to a specialist, examined and started on medication.
But it did not help. Tom fell behind and homeschooling in lockdown was a disaster, so he was allowed back into the classroom with just a few other students and a male teacher who, Holland said, was excellent. “He really took him out of himself, gave him things to do when he was disruptive – it seemed like he had really learned about ADHD. He was great.”
Tom met or exceeded expectations in Year 5 – and then went downhill again the following year, in a large noisy class. He was given a very high dose of medication, but became aggressive, lost weight and did not sleep. Somehow he got through his Sats, and a few days later the nurse practitioner suggested we take him off all medications and start over. “He was a much happier kid. The school said maybe he didn’t need all those strong medications because he’s actually very calm now,” Holland said.
Tom is now on a very low dose of one of the original methylphenidate medications, which works for him and is in no shortage. “It’s a lot of hard work, it’s a constant struggle, kind of juggling things, but he’s doing well,” says Michelle.
The exact remit of the NHS England ADHD Taskforce has not yet been announced, although it will involve bringing together expertise from sectors such as the NHS, education and justice. Something definitely needs to be done, and soon, to shorten the queues for diagnosis and treatment. You can’t help but think that if this was a physical problem instead of a mental health problem, it would be considered a major scandal.
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