Following the proposal of the NHS Long-term Plan (LTP), the Healthwatch network were funded by NHS England and NHS Improvement to engage with communities across the country to establish how the LTP should be implemented locally. Engagement involved gathering views through the NHS Long Term Plan surveys and focus groups and this information has since been shared with local NHS to help develop plans appropriate for the area.
Geographically, engagement work focused in the Redcar & Cleveland area on the experiences of children and young people with autism and learning disability. This was undertaken mainly from the perspective of parents/carers, although a few young people also took part. Within the NHS long-term plan, there is the action to ensure people with learning disabilities and/or autism get better support (NHS England, 2019). We chose this area following wide ranging community intelligence identifying significant issues for young people (18 – 25) with hidden disabilities with the common overarching increase in poor mental health.
Summary of findings:
- Parent-professional relationship: Concerns about a child’s needs raised by parents and carers are not being taken seriously, a lack of support and a culture of ‘parent blaming’ can cause parent/carer/family distress and mental health issues.
- Assessment pathways: The pathways are unclear, and assessments can take a very long time, during which, a child’s and carer’s needs are not met and sometimes misinterpreted.
- Understanding of behaviour: Schools and other institutions may not acknowledge and understand behaviour that challenges without a diagnosis. Without an understanding, schools fail to make reasonable adjustments to behavioural policies leading to unfair/inappropriate treatment, low attendance, school avoidance, exclusions, unhappiness, distress, poor mental health and low achievement.
- Diagnosis: Diagnosis can change perceptions of a child’s presentation and attitudes towards them and their parent’s/carers, yet diagnosis may take years and needs have been lifelong. There is also a lack of understanding around female presentation of autism/learning disability leading to under diagnosis of girls.
- Practitioners: Medical practitioners, including GP’s, often treat multiple presentations of conditions that are associated with autism and learning disabilities, e.g. skin conditions and bowel problems, as individual presentations, and fail to recognise these as long-term health conditions that require longer term management and treatment plans.