"If you start with kind, you've won"

Healthwatch Stoke on Trent decided to undertake engagement on CAMHS delays in and rejection of referrals for autism and ADHD. They undertook surveys, focus groups and drop in sessions.

The report found that many parents and carers feel they must continually "fight" to have their child's needs recognised. Families often described feeling blamed rather than supported, particularly when they were directed towards parenting courses that they felt did not address their child's underlying needs. Some parents reported concerns that challenging decisions or pursuing assessments led professionals to view them negatively. 

Communication emerged as a significant issue. Many families said they did not understand assessment pathways, waiting-list processes or decisions about referrals. Parents reported receiving little information about what would happen next, why referrals had been rejected, or how assessment outcomes had been reached. As a result, some families resorted to making Subject Access Requests to obtain information about their child's case. 

A major finding was the difficulty of getting onto assessment waiting lists. Families described referrals being rejected multiple times, often because of insufficient evidence or poorly completed paperwork. Parents felt that professionals completing referrals frequently lacked sufficient knowledge of the child or the assessment criteria. Some children experienced years of delays before even reaching a waiting list. 

The report confirmed that demand for Autism assessments has risen dramatically. Referrals increased from 416 in 2018 to 1,760 in 2025, representing a 423% increase. Repeat referrals also rose substantially, from 34 in 2018 to 541 in 2025. Meanwhile, waiting times have continued to grow, with children facing average waits of 98 weeks for an Autism assessment in 2025/26. 

Healthwatch also found concerns about inequalities in service provision. Some support services and transition arrangements available elsewhere in the Integrated Care System are not available to children and young people in Stoke-on-Trent. The report suggests this may be widening health inequalities between local areas.

Because of long waits, many families seek private assessments or use the NHS Right to Choose scheme. However, some reported that diagnoses obtained through these routes were not always accepted by local NHS services, leaving children still unable to access support. 

Families described children falling between services, particularly where they had complex needs, learning disabilities or multiple conditions. Parents reported poor coordination between teams and organisations, resulting in children sometimes being left without appropriate assessment or support. 

Schools were identified as playing a critical role in the assessment process, but parents raised concerns about staff knowledge and understanding of Autism and ADHD. Many felt schools were expected to provide evidence for referrals without appropriate training. Parents also believed that quieter children, those who mask their difficulties, or those who perform well academically were more likely to be overlooked

The report highlighted significant difficulties in obtaining Education, Health and Care Plans (EHCPs) and securing appropriate educational placements. Some parents felt compelled to pursue diagnoses because support was difficult to access without formal identification of need. Families also described serious impacts on their finances, employment, wellbeing and wider family relationships, with some parents leaving work to care for their children. 

Healthwatch concluded that improvements are needed across the system, including better communication with families, improved referral processes, stronger integration between services, clearer assessment pathways, greater support following diagnosis and a review of commissioning arrangements to ensure children in Stoke-on-Trent are not disadvantaged compared with those in neighbouring areas. The report makes seven recommendations centred on reducing inequalities, improving transparency, strengthening referrals, integrating services and increasing support for children, young people and their families.