Revealed: the postcode lottery in child and adolescent mental health care
Campaigners have called for urgent and radical reform of NHS children’s mental health services (Alamy)
An FOI investigation by The House has uncovered a postcode lottery in child and adolescent mental health care, with some desperate young people waiting up to four years for help.
When one of her staff members stopped a teenager in the act of trying to take her own life at the supported housing unit she manages, Samantha* sought urgent psychiatric help.
“I was told he didn’t meet the threshold. Here was a 17-year-old with no family around him and a history of self-harm who had just been found trying to kill himself. When I asked what on earth the threshold was, I was told to stop being facetious,” she said, incredulously. “It’s almost impossible to get them the help they so desperately need.”
It’s a story former Children’s Commissioner Anne Longfield says she has heard repeated by young people. “Even if young people attempt suicide, they are not automatically offered support,” she said. “First there is a judgement of whether they actually meant it. For children in such pain to be told they are not believed is devastating and damaging but this is a reflection of the crisis in children and young people’s mental health services. The threshold is so high because the system is buckling.
“It was struggling pre-Covid but the pandemic poured rocket fuel on it.”
A postcode lottery
Campaigners have called for urgent and radical reform of NHS children’s mental health services, after an investigation by this magazine has found desperate young people are waiting up to four years for critical help as waiting lists spiral out of control. We sent FOI requests to 70 UK trusts and boards providing children and adolescent mental health services (CAMHS).
Our research produced evidence of a scandalous postcode lottery, with spending per child four times higher in some parts of the country than others, and average trust waits for a first appointment varying between 10 days and three years.
“We hear about parents sleeping on their children’s floors to keep them safe, children out of education for months and years while they wait for help.”
Children in England fare worse than their counterparts around the UK. Our research found average community CAMHS waiting lists in February have rocketed by two-thirds in two years in England, meaning children are waiting on average 21 weeks for a first appointment. Across the UK they are up by 53 per cent and the wait is 16 weeks, dropping to just three weeks in Wales.
The crisis means consultants and others are making potential life-or-death decisions about young people’s lives every day. Trusts turned away or redirected almost a quarter of a million children without treatment last year as they were forced to raise thresholds to manage their burgeoning post-pandemic caseloads.
Data from the Office for National Statistics, analysed by YoungMinds, has found that suicide rates among under-18s rose by a third from 2020 to 2021 after years of steady falls. Just a third of those young people were in touch with mental health services.
Olly Parker, the charity’s head of external affairs, said: “[The House’s] figures show the system is in total shutdown yet there is no clear government plan to rescue it.
“In the meantime, young people are self-harming and attempting suicide as they wait months and even years for help after being referred by doctors. This is not children saying, ‘I’m unhappy.’ They are ill, they are desperate and they need urgent help. We hear about parents sleeping on their children’s floors to keep them safe, children out of education for months and years while they wait for help. It is not an exaggeration to say it is life and death. How can we as a society allow this?”
Baroness Claire Tyler, the Liberal Democrat spokesperson for mental health in the Lords, said: “[The House’s] figures demonstrate so clearly that what is needed is a root and branch reform of children’s mental health services so that it is easier to get earlier intervention. This really is a big eye-opener to me. I knew there were regional variations but the extent of it has left me quite shocked. They are absolutely unacceptable.
“We need this kind of data to be tracked officially to throw a spotlight on services, enabling transparency and visibility to see where things are going very wrong.”
Shadow mental health minister Dr Rosena Allin-Khan said: “The postcode lottery in children’s mental health services is scandalous – the government is failing our children.
“The recent scrapping of the cross-government 10-year mental health plan has been a huge setback for the future provision of children’s mental health services.”
High barriers to access
Most experts agree we are facing a mental health epidemic among our younger generation. The government’s own figures suggest one in four 17-19-year-olds had a probable diagnosable mental health disorder in 2022, up from one in 10 in 2017, while one in six seven to 16-year-olds were affected, up from one in nine in 2017.
That adds up to 1.7 million children aged seven and over, two-thirds of whom the government estimates do not have any contact with the NHS.
Those children that do make contact are not then guaranteed the help they need. In 2021-2022 32 per cent of referrals – most from GPs – were discharged from CAMHS without any treatment, up from a quarter the previous year, almost a quarter of a million children.
“It was struggling pre-Covid but the pandemic poured rocket fuel on it.”
Again, chances of getting NHS help vary wildly according to location, with 60 per cent of all referrals turned away by one trust and only a small percentage by others, our research found.
For those refused treatment, often because they did not meet the threshold, the choice is stark: their parents can find and pay up to £100 an hour for private therapy or struggle on without professional help.
One mother told the Children and Families Act 2014 Committee: “Having had a seven-year-old son who was so dysregulated he was trying to throw himself out of windows and grabbing knives, there was no support for him (or us). The GP, after two failed CAMHS referrals as he ‘didn’t meet the threshold’ told us, if we could at all afford it, even if it means borrowing money, to find support privately. That CAMHS will not accept a child unless they have made two viable attempts on their own life.”
This, say campaigners, only serves to reinforce the much higher incidence of mental health issues in people from deprived or challenging backgrounds. Children from low-income households are already two or three times more likely to develop a mental health condition. Others may have parents who are themselves struggling with poor mental health or addiction and cannot advocate effectively for their children, leaving a black hole of care.
The long wait for treatment
Maggie*, 47, has just paid more than £1,000 for a private ASD and ADHD assessment for her daughter, Jenny, 11, after spending three years trying to get one on the NHS.
She said: “She is only attending school occasionally because she is being bullied and finds it all too overwhelming. She desperately needs extra support which we can’t access without a diagnosis. I have been pushed from pillar to post and have not even been able to find out if she is on any kind of CAMHS waiting list after her initial assessment concluded it was likely she was on the spectrum and should be screened. She has now been diagnosed with PTSD from the bullying.”
The government has committed to – but not yet implemented or explained how it will help trusts achieve – a standardised target of four weeks for a first appointment. Only 12 per cent of the trusts who provided data met that target.
In England our research found the average wait for a first appointment went up to 21 weeks this winter from 16 in 2021.
In Scotland it went up from 10 weeks to 15 weeks between 2017-2023. In Wales, where trusts tend to have far smaller caseloads, the average wait was just 2.6 weeks in February this year. Northern Ireland’s figures were incomplete.
Fifty-eight of the trusts and boards The House surveyed responded, some with incomplete data due to a cyber-attack which wiped patient records beyond July 2022, or because they did not hold the information requested.
Almost three-quarters of the English trusts surveyed said they currently had at least one young person who had been waiting at least a year to be seen and two-fifths had someone waiting at least two years. The longest wait was 217 weeks and the average longest wait at all trusts is currently 87 weeks across the UK and 93 weeks in England.
Those that offer assessments for neurodevelopmental conditions such as Attention Deficit Hyperactivity Disorder (ADHD) and Autism Spectrum Disorder (ASD) tend to have the very longest, though the national picture is again varied with waits for therapies longer at some trusts. Others do not offer this service or did not include figures in their FOI responses.
Young people in Coventry and Warwickshire had an average wait of 164 weeks for a first appointment including neuro assessments – over five times longer than the next longest wait – but the trust’s most recent available figures, for July 2022, showed a wait of just two weeks when they were excluded. They are an outlier, but it is likely the trust is not alone in such waits.
Sonya Gardiner, Chief Operating Officer, Coventry and Warwickshire Partnership NHS Trust said: “Following dedicated investment over the last 12 months we are proud to have successfully reduced our waiting times for neurodevelopmental diagnostic assessments considerably and are ahead of target to reduce the waiting time further by March 2024.”
Waits for diagnoses can be just as devastating as those for talking and psychological therapies.
Anne Longfield said: “Most mental health conditions develop in the teenage years and if we don’t acknowledge and address them when they arise they can cause misery on a grand scale, putting children and young people at risk of suicide, self-harm and chronic conditions and leaving many spending much of their life dependent on the state for health care and financial support.”
Fran* watched her adopted daughter’s health deteriorate to such an extent she ended up suicidal and unable to stay in the family home after failing to get the help needed at CAMHS.
She said: “We first went when she was six or seven. She was eventually diagnosed with ASD and Foetal Alcohol Spectrum Disorder. The first psychiatrist we saw at CAMHS agreed she needed medication. However, she retired and we waited 18 months for a replacement, during which time our daughter really started to struggle. Then we learned we had been discharged and had to join the queue again. When we were seen, we were denied a psychiatrist and offered talking therapy which just was not appropriate so we left.
“In the decade since we have sought private therapies. She has attempted suicide, self-harmed and become violent at home. We finally got the medication we had been asking for after she was referred back to CAMHS from A&E a decade later and things have changed dramatically but she is now in a residential school. If she had got the help she needed earlier, I do not believe that would have been necessary.”
Research has found almost half of looked-after children have a diagnosable mental health condition and up to four-fifths have concerns around their mental health, yet there is no legal obligation for their care status to be recorded by CAMHS.
Fran’s family is under Sussex Partnership Trust NHS Foundation Trust, the second biggest in the country with more than 30,000 referrals last year across three counties and a £9.1m deficit against an expected surplus.
It turned away almost 12,000 young people last year and had an average wait for a first appointment of more than 20 weeks. It met just six per cent of its target of 80 per cent of cases seen within four weeks last December in Hampshire and 16 per cent in Sussex, compared to 62 per cent of its similar target for adults. A trust spokesperson declined to comment and referred The House to NHS England.
The story is the same across the country, with children’s services under far more pressure than adult services.
In 2022, NHS Providers surveyed all mental health trusts and asked them how they would describe their ability to meet current demand. More than 80 per cent of community CAMHS said they were not able to meet current demand, 30 per cent more than adult community mental health services, the next most burdened.
This is having a devastating knock-on effect on families and social services, says Steve Crocker, President of the Association of Directors of Children’s Services.
He said: “We are seeing children develop such severe and extreme mental distress while waiting for interventions that they are ending up in social care because their loving families cannot cope. It is putting an intolerable strain on social care as well as health care.”
Regional spending inequalities
Overall, spending on children’s mental health services – adjusted for inflation, and excluding spending on mental health services for children with learning disabilities – saw a seven per cent real-terms increase in the year to 2021/22. However, a recent report by the Children’s Commissioner found significant regional inequality in spending on children’s mental health services by local health service commissioning clusters who decide how much of their shared budget to allocate to different services at different trusts.
Funding ranged from £35 per child under the former Doncaster Clinical Commissioning Group (CCG), 0.5 per cent of its total budget, to £135 per child or 2.2 per cent in Salford. CCGs have since been replaced by a new system of Integrated Care Systems (ICSs). Lower investment frequently correlated with poorer service, according to the Children’s Commissioners’ scoring system.
The government has designed the new ICSs to help address inequalities in mental health funding, ensuring any budget increases for medical and physical health services are matched in mental health services. However, campaigners say it will not tackle historic neglect and underfunding of mental health services.
“When I asked what on earth the threshold was, I was told to stop being facetious."
NHS Providers deputy chief executive Saffron Cordery said: “While this is welcome, there was a very low baseline in mental health funding to start with. There are also huge disparities from trust to trust, some due to localised factors such as deprivation levels and recruitment issues and some due to quality of working practices and efficiencies.
“Nobody could have predicted the avalanche of new cases that came with Covid, which, unsurprisingly, particularly affected young people. We now have a huge backlog and rising demand and some trusts are better prepared to cope with this than others.
“While the government did put some extra money in last year it was not nearly enough. We need ongoing sustained strategic investment and we need to look at design and delivery of services.”
Longfield, the chair of the Commission on Young Lives, has called for a £1bn catch-up fund just to put the brake on spiralling waiting lists and times and stabilise a system in crisis so that a wholescale reform of the system can be enacted.
That would include a government commitment to urgently expanding the current pilot programme of in-school mental health support teams, a move from ‘clinicalisation’ of mental health – where children have to be referred in to services and can be discharged if they then feel too overwhelmed to actively engage – to an outreach and open drop-in service, investment in preventative measures such as community centres where young people can socialise safely and engage in healthy activities, and a levy on social media companies to help pay for it all.
A Department of Health and Social Care spokesperson said: “We’re determined to do everything we can to support children and young people with their mental health, no matter their background or location.
“Support in school is vital and that’s why we are increasing the number of school mental health teams to almost 400 by April 2023, providing support to three million children and young people.
“We’re also working closely with NHS England to introduce new access and waiting time standards for mental health services, ensuring quicker access to high-quality care across the country.”
For support with any of the issues raised in this article, go to www.youngminds.org.uk or call the Samaritans on 116123.
*Names have been changed.
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