Experts said “inhumane” waits are putting a generation of neurodiverse children at risk of mental illness as they are “pushed to the back of a very long queue” for children and adolescent mental health services (Camhs).
UK children with suspected neurodevelopmental conditions faced an average waiting time of one year and four months for an initial screening in 2022, more than three times longer than the average wait for all Camhs services, according to research carried out by the House magazine and shared with the Guardian.
Half of all trusts responding to a freedom of information request had an average wait of at least a year, and at one-sixth of trusts it was more than two years. The Nice guidance for autism and mental health services stipulates that no one should wait longer than 13 weeks between being referred and first being seen.
The research also revealed a postcode lottery. Children with suspected ADHD in Belfast are waiting an average of five years for an initial appointment, and the longest wait for neurodevelopmental treatment was seven years. The longest wait for a child in Oxford was five years and 14 weeks. Coventry and Warwickshire had the worst record in England – an average wait of 142 weeks for all neuro first appointments.
An Oxford health trust spokesperson said: “The number and complexity of referrals to our services have increased significantly and our funding has not increased.”
Henry Shelford, the CEO and co-founder of ADHD UK, said people with ADHD were at greater risk of taking their own lives, with 24% of females and 10% of males with ADHD attempting to do so.
“Yet we are hearing again and again that unless a child is at serious risk of harm they are not a priority, they are pushed to the back of a very long queue,” he said. “It is inhumane to make children wait until they are suicidal before helping them.”
He said children’s futures were being blighted by a lack of diagnosis and help. “Diagnosis can bring enlightenment, essential support and legal protection to help these children negotiate their way through life,” Shelford said. “Denying them this is the casual cruelty of the system. It leaves them vulnerable to crime, poor mental health, addiction and family breakdown.”
The House asked 74 UK trusts about waiting times for children with suspected neurodevelopmental conditions: 58 responded, with 31 providing figures for 2022. Twelve said they did not collect the data and many were unable to file complete figures on all questions, said the publication.
The figures collected showed referrals rose by 226% between 2017 and 2022. New NHS data has revealed that across all age groups 140,000 people were waiting for an autism assessment in England in December 2022 – a 40% increase in one year.
Dr Elaine Lockhart, the chair of the child and adolescent psychiatry faculty for the Royal College of Psychiatrists, said regional inequalities were letting families down. “There shouldn’t be that huge variation from one child to another of how long they are waiting. In some areas it does seem to come down to how they are managed,” she said.
She added that Scotland and Wales now had “national service specifications” for children with neurodevelopmental conditions, which set out seven standards of care for neurodivergent children, while NHS England did not. “If we don’t understand what the problem is, we can’t track change. We should be learning from areas that are doing this well,” she said.
A Department of Health and Social Care spokesperson said integrated care boards and NHS trusts were responsible for commissioning services for autistic people and people with ADHD in line with Nice guidelines.
“We know how vital it is to have timely diagnoses for ADHD and autism and we are committed to reducing diagnosis delays and improving access to support. We’ve made £4.2m available this year to improve services for autistic children and young people,” the spokesperson said.
The shadow mental health minister, Dr Rosena Allin-Khan, said Labour would bring down waiting times by recruiting more staff and putting specialist support in schools. “It is a damning indictment of over a decade of Conservative government neglect of our public services that young people are waiting years for a vital autism or ADHD assessment,” she said. “Growing waiting lists are failing patients and damaging children’s futures.”