Umbrella Neuro developmental pathway - Parent feedback report
Download (PDF 233.48 KB)Summary of report content
Healthwatch Worcestershire created this report of experiences from parents of children that had been through the neurodevelopmental conditions pathway.
Healthwatch Worcestershire engagement in the preceding year and through their 2015 CAMHS Survey, they received feedback from parents relating to Autism and related neurodevelopmental conditions, including:
Delays in gaining a diagnosis
Concerns about availability of appropriate support
Lack of information available to parents during and after diagnosis
Feedback was gathered from 40 parents, in a variety of ways: 22 responses to date of an current ongoing Survey, feedback from 15 parents as part of group discussions at Autism West Midlands’ Special Interest Club in Kidderminster and Additional Needs Parent Support Group at Blossom Vale Children’s Centre in Pershore and from feedback given by 3 further parents individually to Healthwatch Worcestershire.
Barriers identified included:
- Parents felt their concerns about their child had not been fully understood or believed when they first recognised them and sought help.
- Many parents said that they did not feel that the professionals who they initially sought help and advice from, in particular GPs, Health Visitors and Teachers, had a good enough understanding of Autism and other conditions to be able to identify if this was the issue or to refer their child on to someone who would.
- Some parents told us that there were delays getting initial appointments with professional about concerns, because of miscommunications about whether or not a referral had been made or received.
Suggetions of what would make things better for parents were: Information for parents about the diagnosis and tips about how to support the child for both parents and for teachers / others e.g. out of school clubs etc, that provides a standardised overview, but can be individualised to reflect the individual child. Information given about support groups, about potential funding & additional support available and about what support should be provided in schools.
Support for parents with hands on support available for parents about how to manage child’s behavior & how to support them. Where appropriate having support available in the home, and also access via phone, email or on line to a professional for advice as issues occur and to help problem solve before issues escalate.
There is no response from a service provider in the report.