A desperate mum has launched a petition calling on politicians to tackle a “growing crisis” over neurodevelopmental assessment delays for children.
Stephanie McDowell, founder of Assessment Before Crisis (ABC Scotland), is calling for every child with significant risk behaviours to receive a neurodevelopmental assessment within six months.
The Perth mum took action after her six-year-old daughter, who is suspected to have ADHD and autism, was rejected by the NHS’s Child and Adolescent Mental Health Services (CAMHS) five times.
View 4 ImagesMum Stephanie McDowell with husband Dale who have called a petition calling for quicker neurodevelopmental assessments for kids.(Image: Alasdair MacLeod/Sunday Mail)
Scottish Parliament figures show more than 42,000 kids have been left without a diagnosis for neurodevelopmental conditions as of March.
Stephanie, 30, said: “I’ve experienced the devastating impact of long waits for assessment and, sadly, my family’s experience is not unique.
“Since launching ABC Scotland, I have connected with hundreds of families who have shared similar stories of children waiting years for assessments while their mental health deteriorates, they struggle in education and their families reach breaking point.
“Our daughter loved nursery and was thriving and ready for school.
“Now, taking her into school can involve her trying to escape. She has been banging on doors, screaming, setting off the fire alarm and attempting to climb over fences to get out.
“The battle to get help has been exhausting. We have had five CAMHS rejections in three months.
“My child is in crisis and the impact is felt across the family.
“The Child Development Clinic accepts referrals for children up to the age of seven and is usually the pathway before CAMHS. That wasn’t our experience.
“CAMHS rejected her referral, saying she would be better suited to the Child Development Clinic, but the Child Development Clinic rejected her and told us to go back to CAMHS.
“We are simply being passed back and forth between services. You honestly couldn’t make it up.”
View 4 ImagesThe huge waiting list may take years to clear(Image: Getty Images)
Stephanie, who has met First Minister John Swinney, her MSP, has now had to pay privately for an assessment.
She said: “Parents are having to remove their children from school because they won’t eat, sleep and are overwhelmed. But where do you go?
“Our experience, and the experiences of the many families who have contacted me, show that children are still being passed between services, refused assessments, and left waiting until they reach crisis before meaningful help is available, if at all.
“Parents aren’t asking to skip the queue, they’re asking to be heard and taken seriously. When a child is clearly struggling, families shouldn’t have to fight for years just to be believed.
“Families need action, not just policy.
“No parent should have to spend thousands of pounds to get answers for their child but we’ve been forced into that because we are desperate for support.
“A diagnosis is essential. It helps children understand themselves and why their brain works the way it does.”
View 4 ImagesIt comes amid a national explosion in the number of children being diagnosed as having ASN (Additional Support Needs), including autism and ADHD.
Stephanie’s husband Dale, 32, said: “We aren’t asking for special treatment.
“We are asking for someone to listen and understand what our child is experiencing.”
Autism and ADHD are neurodevelopmental conditions that can coexist, with a significant overlap. While ADHD is characterised by inattention, hyperactivity and impulsivity, autism is defined by challenges in communication and interaction.
Scottish Autism boss Dorry McLaughlin said: “It is critical we have a national guarantee, whereby people can get assessments and support and in a reasonable timescale.”
The Scottish Children’s Services Coalition said: “We welcome this petition. The number of children with additional support needs and complex presentations makes clear assessment must be fit for purpose.”
Mental Wellbeing Minister Maree Todd said: “While a diagnosis can be important, it should never be a barrier to receiving support. What matters is people get the right support. That is why we have provided £2.9million additional funding to improve access.”
A spokesperson for NHS Tayside said: “Demand for neurodevelopmental assessments has grown significantly in recent years, and the Scottish Government has recognised the scale of this challenge by commissioning a national Neurodevelopmental Taskforce.
“The Taskforce is now leading work to develop a whole‑system approach to supporting neurodiverse children, young people and adults.”
The petition can be viewed and signed here https://petitions.parliament.scot/petitions/PE2230