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An investigation by The House has revealed that children with suspected ADHD and autism are waiting up to seven years for neurodevelopmental appointments.
The House approached 74 UK NHS Trusts and asked them to provide data on waiting times for initial neurodevelopmental appointments and assessments. In total, 58 responded, but 12 said they did not collect the data and many trusts were unable to complete all the questions.
The data from the 31 trusts that were able to provide 2022 figures painted a bleak picture, with waiting times for children averaging one year and four months for an initial screening. The longest average waiting times seen were in:
Belfast also had the longest overall wait of seven years, while in Oxford it was five years and 14 weeks.
Campaigners say children with suspected neurodevelopmental conditions are being pushed to the back of the queue as overwhelmed services continuously prioritise the most critical cases, and this is having a huge impact on children and their families.
Without a diagnosis, autistic children and those with ADHD are left without support, which can take a toll on all aspects of life, including school, socialising and mental health.
Henry Shelford, CEO and co-founder of ADHD UK, told The House that these long waits could have a disastrous effect on children’s lives.
“We know that 24 percent of females and 10 percent of males with ADHD will try to take their own lives. Yet we are hearing again and again that unless a child is at serious risk of harm they are not a priority, and they are pushed to the back of a very long queue.
“[These] figures show that the 13-week target maximum wait is laughable. It is inhumane to make children wait until they are suicidal before helping them.
“As well as the clear risk to life, their entire future can be severely and irrevocably altered if they do not get the right support in time. Diagnosis can bring enlightenment, essential support and legal protection to help these children negotiate their way through life. Denying them this is the casual cruelty of the system. It leaves them vulnerable to crime, poor mental health, addiction and family breakdown. Almost half of those in young offenders institutions have ADHD,” he said.
The news comes at the same time a large study revealed that there has been a significant rise in ADHD diagnoses in the UK. While ADHD was found to be more commonly diagnosed in children than in adults, the largest relative increase was seen among adults.
For example, between 2000 and 2019 there was approximately a 20-fold increase in ADHD diagnoses and nearly 50-fold in ADHD prescriptions in men between the ages of 18-29. However, there was no significant increase in children under five.
Lead author of the study, Dr Doug McKechnie (UCL Institute of Epidemiology & Health Care), says specialist service may now be needed to deal with the huge rise in demand for ADHD assessments.
“ADHD diagnoses and prescriptions for ADHD medication by a GP have become more common over time. Whilst ADHD is most likely to be diagnosed in childhood, an increasing number of people are diagnosed for the first time in adulthood. We do not know exactly why this is happening, but it may be that ADHD has become better recognised and diagnosed.
“Over the last few years, there have been many reports of long waiting lists for ADHD assessments on the NHS, especially in adults. It’s likely that more and more people will be diagnosed with, and treated for, ADHD, so specialist services need to be made available to handle this,” he said.
Shadow mental health minister Dr Rosena Allin-Khan told The House that if Labour win the next general election, they will ensure everyone has access to a community mental health hub which will speed up diagnosis waiting times.
“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. Growing waiting lists are failing patients and damaging children’s futures.
“The next Labour Government is committed to bringing down waiting times by recruiting thousands of additional staff and will ensure access to specialist support in every school while also putting an open access mental health hub in every community, paid for by closing tax loopholes and ending private schools’ tax breaks,” she said.