We must do better than this

Why is the healthcare system failing our most vulnerable children?

The following scenario is true. I have the child’s parents’ permission to tell the story, but have changed the child’s name to preserve anonymity. I have reason to believe that similar scenarios are playing out across the south-east and possibly the whole country.  

Adam’s mother attended my surgery in July 2025 and described Adam’s difficulties. She was concerned that he might have autism spectrum disorder (ASD), plus or minus attention deficit hyperactivity disorder (ADHD). His teachers and extended family members shared the same concerns. His story was one of emotional dysregulation, difficulty communicating his needs, school refusal, severe separation anxiety from his mother, sleep disturbance, and sensory issues. Adam was seven. His difficulties had been apparent for several years and had significantly impacted family life.

Adam had received some educational input, attended play therapy, and his mother had participated in local parenting groups and classes, and now did not know who to turn to.  After a lengthy consultation, I decided to refer Adam to the Child and Adolescent Mental Health Services (CAMHS) in the first instance. His referral was declined, stating that he did not meet the criteria for mental illness. The CAMHS consultant recommended an Assessment of Need (AON). AON is a statutory legal assessment under the Disability Act 2005 that identifies disability-related health and educational needs and necessary services, but does not guarantee their delivery. Adam’s mother completed the necessary forms, the assessment was conducted, and a statement was issued. The outcome led to Adam being referred to a private clinic for ASD assessment. He met the criteria for ASD. Further referrals for speech and language therapy and occupational therapy were sent to the local primary care services. It was recommended that he attend me, his GP, for an onward referral to CAMHS and child and adolescent psychology. 

On receipt of this report, I requested that Adam’s mother attend a follow-up consultation to check-in with her and obtain consent for further referrals. I then wrote both referrals, detailing Adam’s pathway through the services to date, his psychosocial difficulties, and the impact on family life. These letters took time and effort, but I wanted to give Adam the best chance of a timely assessment in the hope that he would be offered appropriate services. It would have been worth it if the outcome had been positive. Unfortunately, this was not the case. 

CAMHS again declined to offer Adam an assessment, stating that he did not meet the criteria for mental illness, and the consultant recommended a referral to the children’s disability network team (CDNT). CDNTs are clinical teams re-configured from the early intervention teams and school age teams, between 2013 and 2018, when the nationwide roll-out was completed. Parents, teachers, or public health nurses can refer children to this service, but in reality, all referrals come through the GP, as it involves filling out two lengthy referral forms (up to 24 pages of information for some age groups), and parents have difficulty navigating the process. CDNT services are for children who have significant functional impairment, suspected ASD or ADHD, motor delay, sensory processing difficulties, communication concerns, etc. The stated goals of CDNT therapy include communication, mobility, feeding, independence, school participation, and improved family function.

With a sinking heart, I called Adam’s mother and explained the situation. She had also received a copy of the letter from the consultant. I explained that, as Adam was already referred to primary care services, he was unlikely to be accepted for assessment by the CDNT. (This has been the case for other children in my practice). But, as this was a very complex case, I reviewed all previous referral letters and sent them, along with a cover letter, to the CDNT. 

This was met with a same-day reply stating that the team would not consider the referral because I had not completed the national CDNT referral forms. I was told by the administrator that there was no way around this; if I wanted Adam to be considered for assessment, I had to fill the 24-page referral form, even though all the relevant information was already sitting on her computer. 

I have declined to do this. Since its roll-out, CDNT has been hampered by a lack of staff and excessive bureaucracy, yet instead of acknowledging this as a reason not to accept children, the teams create barriers for families and GPs who try to access the service. The pathway to appropriate services for these children is hampered by obstacles, leaving children and families unsupported. This is frustrating and time-consuming for GPs, but it is much worse for the children and their families. I don’t have the answers, but surely there must be some way that we can do better than this for vulnerable children.