10 July 2026
Rareminds is encouraged to see that the Children’s Commissioner’s fifth and final report on children’s and young people’s mental health services calls for ‘a new vision for childhood, one that doesn’t silo mental health away from education, care, or physical wellbeing’ and for a system ‘that works together to nurture, support, and empower every child from the start’.
We also welcome the acknowledgement that ‘no child should have to wait for a diagnosis before they get support’. We believe this is true for both physical and mental health. The report also notes that children with suspected neurodevelopmental conditions (at least some of which will be rare), are being referred in large numbers to Children and Young People’s Mental Health Services (CYPMHS) but are then effectively ‘stuck in the system’.
Many aspects of the report are troubling but, mirroring the stories we hear in our counselling services, not particularly surprising:
- Referrals for children with behaviours that challenge due to a learning disability saw the largest proportional increase, up 91% between 23/24 and 24/25.
- 63% of children with behaviours that challenge due to a learning disability had their referrals closed.
We often hear of how other mental health/psychology services turn people away at triage for being ‘too complex’ because of their rare condition. While the data does not indicate if the children were referred onto more specialist services when the referral was closed, our assumption based on the common barriers experienced in the rare community would be that this is often not the case and families are left to cope alone.
This new vision for children’s mental health must ensure that every child or young person impacted by an undiagnosed or diagnosed rare condition (whether they are affected, or have a sibling, parent or family member who is) is able to access services that meet their needs. Those services must also understand the complex and over-lapping challenges rare conditions can create for mental health and wellbeing.
Equally, it is vital that where a diagnosis of a rare condition does exist, it does not overshadow the psychological needs of the individual and become a barrier or reason to deny access to mental health services by nature of being ‘too complex’.
childrenscommissioner.gov.uk/resource/childrens-and-young-peoples-mental-health-services-2024-25/