Exclusive:'Morally repugnant': Inside a mother's desperate battle for NHS mental health treatment for her son
The Scottish Liberal Democrats have argued children with autism and ADHS, along with other neurodevelopmental conditions, are being excluded from accessing CAMHS.
A mother of two autistic children has claimed it is an “open secret” that children cannot get NHS mental health treatment unless they are actively trying to kill themselves.
Her eight-year-old son, who is also non-verbal, ended up in accident-and-emergency (A&E) four times in the past year. He has been referred to NHS Ayrshire and Arran’s child and adolescent mental health service (CAMHS) by the A&E department, his GP and his school - but all requests have been rejected.
The Scottish Liberal Democrats say they have also been told children with autism and ADHD are being “systemically excluded” from accessing CAMHS.
The child’s mother, who did not wish to be named, said this was a “scandal” and “morally repugnant”. She said she had ended up having to rely on family members to pay for private treatment.
Speaking to The Scotsman, the mother said: “He has had so many referrals to CAMHS all saying ‘please help this child’, but we keep getting turned down.
“The more I speak to other autistic parents, the more this seems to be a pattern if they are struggling with suicidal ideation. There is an open secret - CAMHS are not accepting anyone unless they’ve actively tried to kill themselves.
“It is ridiculous. It is not acceptable for so many kids to be left behind when they are in such trouble. It is a scandal and morally repugnant.”
Last year 754 CAMHS referrals were rejected by NHS Ayrshire and Arran. Of these, 428 had been referred because of “ADHD, ASD, ADD, FASD, LD, Asperger’s or neurodevelopmental assessment”.
Official figures published in March showed 90 per cent of young people had started treatment within 18 weeks of referral to CAMHS.
However, the Royal College of Psychiatrists in Scotland has stressed there are no routinely published figures for the number of children on separate lists waiting to be assessed for neurodevelopmental conditions. The organisation has previously called on the Scottish Government to be more transparent.
The family who spoke to The Scotsman ended up paying for private treatment with financial help from grandparents. The initial assessment cost more than £700 and every three-month appointment was another £250.
The child’s mother said the private treatment was benefiting her son, which she said had showed he should have had his CAMHS referrals accepted.
She said: “Not everyone has the resources to go private and I have spoken to other parents who haven’t been able to do this.
“I want to see CAMHS helping children, it is as simple as that. My son is my first priority and I want to be able to help them without paying an arm and a leg for it.”
NHS Ayrshire and Arran said it had achieved its treatment target of 100 per cent. However, the health board said CAMHS only accepted referrals for neurodevelopmental assessments where the child also had a “clearly defined and treatable mental illness”.
Caroline Cameron, director of North Ayrshire Health and Social Care, said: “In line with Scottish Government recommendations, CAMHS now only accept referrals for neurodevelopmental assessments for those children and young people who have met the CAMHS criteria of having co-occurring mental health needs.
“The service has developed the neurodevelopmental CAMHS team specifically to provide assessment and diagnosis for children and young people whose neurodevelopmental disorder co-exists with a clearly defined and treatable mental illness.”
She said new guidance was published in September 2021 for neurodiverse children who were referred to CAMHS, but said often these children “do not always meet the mental health criteria”.
Ms Cameron added: “We are unable to comment on specific cases, however, would encourage any individual or guardian to contact services directly if not satisfied with the level of care and support or information provided by a service.”
Opposition politicians in Holyrood said the blame for this lies squarely at the SNP’s door.
Scottish Lib Dem leader Alex Cole-Hamilton said: “GPs and campaigners have told me that kids with neurodiversity issues like autism and ADHD are being systemically excluded from accessing CAMHS.
“If your kid broke their arm, you’d expect them to be seen the same afternoon. But faced with mental health or neurodiversity conditions, they might face a wait that stretches into the years if they can get care at all.
“The NHS is supposed to be free at the point of need, but for those families it simply isn’t there. That’s the result of years of SNP neglect.”
Mr Cole-Hamilton added: “Scottish Lib Dems led the charge in getting the Scottish Parliament to declare that there is a mental health crisis, despite opposition from the Government.
“Since then, we’ve set out a detailed plan for ensuring everyone has access to comprehensive mental health support, including training more professionals in key roles, from psychiatrists to mental health officers. That’s the services that Scotland deserves.”
Dame Jackie Baillie, Scottish Labour’s health spokeswoman, added: “This heart-breaking case lays bare the real human cost of the SNP’s mismanagement of our NHS.
“Children in desperate need of support are left languishing on waiting lists for months or even years on end, and in some cases they are being turned away from overstretched services altogether.
“It is a scandal that this family has been forced to go private to get their son the help he needs and it demonstrates that our NHS is no longer free and available at the point of need.
“A Scottish Labour government will turn the page on SNP failure and rebuild services so families like this can trust that the NHS will be there for them in their hour of need.”
A spokesman for the Scottish Government said: “While we cannot comment on individual cases, referrals to CAMHS can be made for a number of reasons, including where a child or young person is displaying clear symptoms of mental ill health which places them or others at risk or when it is having a persistent impact on their day-to-day lives.
“It is not the case that access to CAMHS is only offered where there is believed to be a danger to life.
“Not all children and young people need specialist services like CAMHS. For many, support will be community-based and it should be quickly and easily accessible.
“When a CAMHS referral is not appropriate health boards are required to sensitively signpost other available services, including community-based supports, that can be accessed by children and young people.”
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