UK children with ADHD wait up to two years for diagnosis, say experts


Children with ADHD are waiting up to two years for a diagnosis in the UK, harming their chances of education and prospects for the future, say experts.

ADHD – attention deficit hyperactivity disorder – is a recognised mental health condition. Psychological support and medication can transform children’s lives and those of their families. Yet data seen by the Guardian shows a chaotic situation, with some children being seen by children’s mental health specialists within a couple of weeks but most having to wait for months or years.

The revelation, from a Freedom of Information request by the all-party parliamentary group on ADHD, appears to undermine the recent controversial assertions of Ofsted’s chief inspector, Amanda Spielman, that too many parents are getting their children diagnosed and given drugs for ADHD rather than addressing their behavioural problems.

The APPG found a postcode lottery across the country. Children in Somerset can get help within a month, while those in Cheshire and Wirral are kept waiting for two years, in spite of an 18-week target. In Barnsley, it can take up to 10 months to get a diagnosis for a child under 5, and two years and four months for a child aged 5 to 16.

Some clinical commissioning groups (CCGs) say they do not hold figures for the number of children and adults diagnosed in their area, nor waiting times, even though they are responsible for paying for the service.

Jo Platt, Labour MP for Leigh and chair of the all-party group, said the findings of two-year waits were “really, really shocking”. There was a public perception that all children who behaved badly were being labelled as ADHD and put on pills – or even that parents pushed for medication to help their children get better marks in school, as is said to happen in the United States. But in the UK, “that is not the reality. It is really difficult to get that diagnosis,” she said.

She wants better data. “The information isn’t collated centrally. That’s why we need government to agree to do that for us, to know the extent of the problem,” she said. “You can’t determine anything until you have a clear picture of what is going on nationally.”

Platt and Daniel Johnson, the Scottish MP who is on medication for ADHD, wrote to Spielman saying they were “very disappointed” with her comments. Given that 5% of the population are estimated to have ADHD, there is under-medication because only a fraction of that number are on the drugs, they said to her.

This week Spielman wrote back, appearing to give no ground. While she recognised ADHD as a medical condition and would not discourage parents from seeking medical help, “there has been a significant rise in the number of children who are on medication for behavioural problems,” she told the MPs in a letter seen by the Guardian and repeated in a statement to the paper. “A number of medical studies have raised the possibility of over-diagnosis. I am concerned that we may sometimes be dealing with the symptoms of bad behaviour without addressing the underlying issues.”

ADHD is recognised by the National Institute for Health and Care Excellence (Nice) as a neuro-developmental disorder, just as autism is. It recommends prompt referral to a child mental health specialist. But Platt said the MPs had been inundated with stories from families whose children had not been given the help or support they needed. Some had ended up paying to see a doctor privately.

“Young people have been failed by the lack of support in school,” she said. As a mum herself, she was aware of somebody with problems at her children’s school. “After years and years, they were diagnosed with ADHD, but all their primary school life they were considered disruptive, naughty and withdrawn. The impact that must have on the child and the wider family is horrific.”

Schools are in a position to spot children needing help, but a report last year by another support group, the ADHD Foundation, found “dangerous misperceptions” among teaching staff. A survey of parents found that 38% had been criticised for poor parenting skills and nearly a quarter were told by teaching staff that ADHD was over-diagnosed.

Some schools “are still under the illusion that ADHD is some sort of acronym for inappropriate behaviour,” said Dr Tony Lloyd, chief executive of the foundation. “They do not understand ADHD as a cognitive impairment. They do not understand that it is an enduring myth that all children with ADHD are poorly behaved.”

Ilina Singh, professor of neuroscience & society at the University of Oxford who led the Voices project exploring children’s own perceptions of their ADHD, said there needed to be better understanding and co-operation between schools, the medical community and families, instead of “finger-pointing”.

In the Voices project, they found that “particularly parents who were in low resource settings were often afraid to go and talk to the school. Boys in particular were often labelled as the naughty children and that then stigmatised the family and so there was this disconnect between the family and the school,” she said.

“We’ve been trying in the mental health UK community to convince even the government that schools have just a really, really amazing opportunity to get better at mental health promotion and prevention.”



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