CAMHS crisis - the long wait for neuro assessments
In a follow up to our investigation in April, the House has learned thousands of children with suspected ADHD and autism are suffering “severe and irrevocable damage” to their futures, as they wait up to seven years for NHS help. Justine Smith reports.
Campaigners have told The House the “casual cruelty” of a broken NHS system is putting a generation of neurodiverse children at risk of mental illness, family breakdowns, deprivation and even criminality, after an investigation by this magazine has revealed waits of up to seven years for treatment.
In April this magazine revealed a scandalous postcode lottery with spiralling waiting lists in the country’s children and adolescent mental health services (CAMHS). It was clear that children with suspected neurodevelopmental conditions were being pushed to the back of the queue as the overwhelmed services struggled to cope with the most critical cases.
We went back to 74 UK trusts to ask specifically about this neglected cohort. Fifty-eight responded, 12 said they did not collect the data and many trusts were unable to file complete figures on all questions. The 31 that were able to provide 2022 figures had average waiting times of one year and four months for an initial screening. That is more than four times longer than the NICE guidance for autism and mental health services, and more than three times longer than the average wait for all CAMHS services.
The longest average wait in the UK was in Belfast: five years just for an initial appointment for children with suspected ADHD. Coventry and Warwickshire had the worst record in England, 142 weeks for all neuro first appointments. Belfast also had the longest overall wait of seven years, while in Oxford it was five years and 14 weeks.
An Oxford Health Trust spokesman said: “The number and complexity of referrals to our services have increased significantly and our funding has not increased.”
Half of all responding trusts had an average wait of at least a year while at one sixth it was more than two. The latter figure was zero in 2017.
The desperate children on these lists can wait months and even years beyond those initial appointments before they are finally assessed, sometimes being bumped to the back of adult queues if they hit 18 before they are seen.
In the meantime, most are left to struggle without any additional support, placing a huge burden on their families, their schools and their mental health.
Henry Shelford, CEO and co-founder of ADHD UK, said: “We know that 24 percent of females and 10 per cent 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, they are pushed to the back of a very long queue. Your 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."
We are hearing again and again that unless a child is at serious risk of harm they are not a priority
More than 90,000 children with autism are currently on NHS waiting lists but there is no data for young people with ADHD, Tourette’s Syndrome or Foetal Alcohol Spectrum Disorder. Global research suggests that between them, they could account for more than 10 percent of all children, 10 times more than the number of autistic children. The recent surge in demand for assessments – our figures showed referrals rose by 226 percent between 2017-2022 – clearly reflect a history of gross underdiagnosis.
Shadow mental health minister Dr Rosena Allin-Khan said: "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.”
Campaigners believe these unsupported neurodiverse children could account for a significant proportion of the 90,000 pupils labelled “severely absent”, missing more than half a school term, the 22 per cent deemed persistently absent for missing at least seven days a term and 50,000 children being home-schooled whose parents listed ADHD or autism as the reason.
Jess Tomlinson, 34, set up the campaign group #monthsnotyears with another mum after her two sons waited more than eight years between them for assessments under Coventry and Warwickshire Partnership NHS Trust.
They were finally diagnosed when a charity paid for private assessments. Her eldest now has an eating disorder and she is home-schooling her younger son because bullying and lack of appropriate support in his mainstream school was severely affecting his mental health.
She said: “I was told the wait was an average of 84 weeks when my eldest got on the list but by the time we left and went private it had been four years. In the neighbouring county, South Staffordshire, the waiting list is 12 weeks. Why is it three months on one side of the border and several years on the other?
“Yet again it fell to a charity to fill in the gaps in the NHS. How many more parents are paying privately and hiding the true extent of the crisis?
Joey Nettleton-Burrows, policy and public affairs manager at the National Autistic Society, said: “There are no publicly available figures on how many people have removed themselves from waiting lists for an autism assessment but, anecdotally, we do hear about people feeling they have no other option but to go private due to waiting times. This shouldn’t have to happen.”
A Department for Health and Social Care spokesperson said: “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 £4.2 million available this year to improve services for autistic children and young people.
“NICE has clear guidelines on ADHD and autism diagnosis and treatment. Integrated Care Boards (ICBs) and NHS Trusts are responsible for commissioning services for autistic people and people with ADHD in line with such guidelines.”
However, Dr Elaine Lockhart, chair of the child and adolescent psychiatry faculty for the Royal College of Psychiatrists, said regional inequalities showed that differing priorities and management at some ICBs were leaving families badly let down.
She said: “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. Scotland and Wales now have national service specifications for children with neurodevelopmental conditions but NHS England does 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.”
Jo Holmes, children and young people and families lead at the British Association for Counselling and Psychotherapy, said: “Our therapists report an avalanche of referrals from families needing them to hold on to their children while they wait, sometimes years, for an assessment.
“What is available to these people on the NHS are low level interventions in schools at one end and CAMHS at the other for the most extreme cases. There is a huge chasm, the missing middle, where young people are really struggling and need urgent, structured support, which just isn’t happening.”
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