Umbrella Neuro developmental pathway - Parent feedback report

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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.

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General details

Report title 
Umbrella Neuro developmental pathway - Parent feedback report
Local Healthwatch 
Healthwatch Worcestershire
Date of publication 
Saturday, 1 October, 2016
Type of report 
Report
Key themes 
Access
Administration
Admission
Booking appointments
Communication between staff and patients
Complaints procedure
Diagnosis
Information providing
Quality of appointment
Quality of staffing
Referrals
Service delivery organisation and staffing
Staff attitudes
Staff levels
Staff training
Support
Waiting times and lists for treatment
Healthwatch reference number 
Rep-5582

Methodology and approach

Was the work undertaken at the request of another organisation? 
Yes
What type of organisation requested the work 
Other (please specify)
If this work has been done in partnership, who is the partner? 
Worcestershire Health and Care Trust
Primary research method used 
Survey
How was the information collected? 
Survey
If an Enter and View methodology was applied, was the visit announced or unannounced? 
N/A

Details of health and care services included in the report

Secondary care services 
Child and adolescent mental health services (CAMHS)
Neurology
Mental health services 
Child and adolescent mental health services (CAMHS)
Social care services 
Children services
Community services 
Community based services for people with a learning disability

Details about conditions and diseases

Conditions or diseases 
Neurological conditions
Types of disabilities 
Learning or understanding or concentrating
Social / behavioural

Details of people who shared their views

Number of people who shared their views 
40
Age group 
Not known
Gender 
Not known
Ethnicity 
Not known
Sexual orientation 
Not known
Does the information include public's views? 
Yes
Does the information include carer's, friend's or relative's views? 
Yes
Does the information include staff's views? 
No
Does the information include other people's views? 
Yes
What was the main sentiment of the people who shared their views? 
Negative

Outcomes and impact

Were recommendations made by local Healthwatch in the report? 
Yes
Does the information contain a response from a provider? 
No
Is there evidence of impact in the report? 
No
Is there evidence of impact external to the report? 
Not known

Network Impact
Relationships that exist locally, regionally, nationally have benefited from the work undertaken in the report
 
Implied Impact
Where it is implied that change may occur in the future as a result of Healthwatch work. This can be implied in a provider  response, press release or other source. Implied impact can become tangible impact once change has occurred.
 
Tangible Impact
There is evidence of change that can be directly attributed to Healthwatch work undertaken in the report.