Kayleigh Robinson’s little girl was six when she started self-harming. She picked her skin until it bled and, at night, her parents found her rocking on all fours. She got out of bed to find things to chew on – at one point, that was a cheese grater. Her dad slept on the floor because they were so worried.
Robinson’s daughter is one of hundreds of thousands of UK children facing severe mental health struggles. Chronic underfunding for children and adolescent mental health services, often referred to as CAMHS, and a decade of cuts to public spending has left the services unable to cope with soaring demand in the aftermath of the Covid-19 pandemic. This lack of support is becoming an epidemic in itself for the UK’s youth.
“Children and young people are desperate for help to improve their mental health and the pandemic has made this an emergency that we must respond to urgently,” former children’s commissioner Anne Longfield writes in a recent report into young people’s mental health services.
“A collapse in many of the family and youth support services that existed ten or twenty years ago leaves us playing catch up,” she adds. “As one parent put it to us during our evidence sessions: ‘All the stuff that used to be there to prevent things happening isn’t there anymore.’”
The figures speak for themselves. The number of open referrals in children and young people’s mental health services reached a record high of 457,386 in May, according to NHS statistics, beating the previous high reached in March.
And those are just the children who accessed the services. Thousands more, across all age ranges, are put on waiting lists in times of crisis or simply turned away. A recent survey by YoungMinds revealed just over a quarter (26 per cent) of young people had tried to take their own life while waiting for mental health support.
Robinson says she begged her GP for a referral, using buzzwords she’d learned as a children’s nurse to meet the threshold. The family was desperate for help and, at that point, they believed the services would provide it.
Problems started at the first assessment. It was longer than three hours and Robinson’s daughter, now seven, was mute the whole time. She is autistic and silence is her way of communicating fear and discomfort.
“I knew it was an uncomfortable appointment,” Robinson says, “but I allowed it to go on because my perception was that what we were going to gain from this process would outweigh the trauma.”
Robinson says the psychologist had little experience with autism and struggled to engage with her daughter in a positive way. The follow-up report got her name wrong and failed to note she’d been mute, the mother claims. “It was just so inaccurate that it felt to me like the clinician had probably done multiple assessments in one day and got them mixed up.”
The second assessment was better, and the girl was diagnosed with generalised anxiety disorder – but Robinson feels the diagnosis didn’t go far enough or offer meaningful solutions.
Advertisement
“I have a child who has probably got lifelong scarring from self-harming on her face,” she says. “At the point of the assessment, she was covered in about 20 open, bleeding sores.”
Robinson and her partner were sent on a parents’ course on how to manage their child’s anxiety. As a children’s nurse with a degree in child development, she wasn’t sure it could offer anything she didn’t already know but it was out-of-date, inaccurate, and offered sweeping generalisations about children with autism, she claims.
Now, her daughter’s case is in limbo. It’s not officially closed, but she’s not getting support either. Her anxiety is so severe she cannot go to school, so Robinson has given up her job. With nothing from the local services she is paying for a private psychologist.
“When things were really bad,” Robinson says, “I felt that the world was caving in. I sat awake all night writing emails. I genuinely thought I was going to have a stroke.”
Specialist children’s mental health services turned away one in four children referred to them for treatment in 2019, according to the Local Government Association. Around 75 per cent of young people with a mental health problem are forced to wait so long their condition worsens or they’re unable to access any treatment at all.
“Your child has to be really very sick to actually have any purposeful input,” Robinson says. “It’s not about prevention and maintaining people’s wellbeing. It’s waiting until they’re at a point of absolute crisis and then trying to pick up the pieces.”
Advertisement
Those in power need to truly understand the struggles young people and parents are facing today. Only then will things get better. If they understood what it was like for young people to wait months/ years for the support they need, support would not be like it is today.
Olly Parker, head of external affairs at YoungMinds, explains “long waiting times and high thresholds for accessing support can cause young people’s mental health problems to escalate into crisis, when this could have been prevented with better access to early help”.
Another mother told the Big Issue she had a similar experience, saying she repeatedly sought help before her son reached breaking point. A severely autistic 11-year-old, his mental health spiralled during the pandemic, which particularly impacted children with special education needs.
“He was having meltdowns in school every day,” the mother says. “He was having to be physically restrained by staff. It was a melting pot of disaster.” In June this year, he had such a huge outburst she was advised by the school and a caseworker to take him to A&E.
“We had a 2.5 hour wait at the hospital,” she says. “I was being punched and kicked. He told them very clearly that he’s got urges to hurt people and to kill people.”
But the hospital staff said they were unsure why she was told to bring him there. “I just sat there stunned,” the mother says. “I didn’t know what to say. The community CAMHS [children and adolescent mental health services] had told me to come here. I was doing what I was told to do.”
After they were turned away, his struggles escalated. He was too distressed for school. For three weeks, he didn’t wash, change his clothes or brush his teeth. He was eating sporadically. He was awake for two days at a time, refusing his sleep medication. As a single mother, she tried to help but every time it was met with violent outbursts.
Advertisement
“It culminated in a day where he would just fly off the handle,” she says. “He would suddenly be in front of me screaming his head off, fists clenched and chucking things at me. He went to the kitchen drawer. He pulled a hammer out and attacked me. He was repeatedly screaming that he was going to kill me.”
She called for an ambulance but the police arrived at her door. They were patient and helped calm him but she was clear she did not want to press charges – she wanted medical help.
Two days later, he pinned her to the ground, restraining her by her neck and head. “I called the social worker crying. She said I needed to call CAMHS right now because she could hear him in the background saying he wanted to kill me.”
An ambulance was called and, this time, there was no denying he needed to be admitted. That was over two months ago. He remains in the same general ward of a children’s hospital, his mother is by his bedside constantly. It’s not a specialist mental health unit and he’s getting no one-to-one support. She worries about what will happen when he’s released.
“I’m sleep deprived,” she says. “My hair’s turning white and falling out. I know it’s hard for me, but ultimately it is going to be infinitely harder for him. It’s an illness. It’s not him. I know my son and I love my son. It breaks my heart.”
He is starting to get better, but she worries hospitals across the country are turning children away when they’re in crisis and it could cost lives. “They put my life in danger,” she adds.
Advertisement
Just over one in three children and young people with a diagnosable mental health condition get access to NHS care and treatment, according to YoungMinds.
On average, local clinical commissioning group areas spend less than 1 per cent of their overall budget on children’s mental health, the Commission on Young Lives reports.
And public health funding, which funds school nurses and public mental health services, has seen a £700m real terms reduction in funding between 2014/15 and 2020/21.
According to the NHS Confederation, “there is mounting concern that the mental health system for children and young people in England is reaching a tipping point, with the pandemic having exacerbated existing challenges”.
It urged the government to address chronic understaffing, increase funding, and invest more in specialists and training in the wider workforce. NHS England did not respond to requests for comment.
Kae Fairhill’s experience with her autistic 16-year-old daughter echoes the other parents’ stories. She suffered severe anxiety for years and, at her worst, she was manic.
Advertisement
“I locked myself and my youngest daughter in our bedroom because she became quite violent,” Fairhill says. But even in that moment of desperation, they couldn’t get any support. “We couldn’t get anyone to see her. We phoned GPs. The answer was to take her to A&E.”
A hospital comes with sensory overload for autistic people and it would have “tipped her over the edge”, Fairhill says, and she was terrified her daughter would be sectioned in an assessment and treatment unit. These were created to provide short-term care for autistic people in crisis but, according to data released last year, the average stay is over five years.
We've heard enough promises from politicians.
While they’re deciding who should be in charge, record numbers of young people are being referred to mental health services. And hundreds of thousands of young people are waiting for the support they need.
Last year, the government announced a 10-year plan to “deliver the fastest expansion in mental health services in the NHS’s history”. It promised to put children and young people at its heart, so that an extra 345,000 children and young people can get support.
At YoungMinds, Parker urged Liz Truss “to recommit to this promise, and for it to include urgent action on access to NHS services and dedicated mental health funding for schools”.
But parents say more immediate support is needed. Ceri Reed, of the support group Parents Voices in Wales CIC, said: “Parents get hot-potatoed from one service to another, knocking on different doors because services aren’t joined up. We want fluidity between the services, not long waiting lists.
“We want a whole-system approach, where the school can say they can’t meet the child’s needs and can refer them on for a neurodiversity assessment or mental health support.”
Advertisement
Fairhill’s voice breaks as she fights the tears. “The thought of other people going through what we have is traumatising in itself,” she says. “They need to realise that we need help.”
