Parent and carer experiences of Autism Spectrum Disorder Services

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Summary of report content

In 2017 Healthwatch Wakefield decided to investigate service provision and the experiences of assessment and treatment for Autistic Spectrum Disorder (ASD) in response to concerns raised by various sources, including parents. There were specific concerns that an increased investment in ASD services and assessment had resulted in minimal impact on waiting times. From May - July 2017, Healthwatch Wakefield engaged with parents and carers of children with Autism Spectrum Disorders (ASD) through voluntary and community sector groups which included the Beat Autism group, the Fusion Youth Club and Kidz Aware. The numbers of parents and carers interviewed were relatively small, with a total of nine interviewees. The data collected was qualitative in nature and the data was analysed and sorted into key themes which are detailed in the main body of the report. All feedback was from White British parents and carers. Overall, there was a feeling of lack of resource for the service which was displayed by the long waiting times for assessment, lack of support for parents and carers prior to and following diagnosis and access to specialist staff and the therapy support following a diagnosis. In addition to an increase in the support services available for parents and carers and their children there was also felt to be a need for training for staff working in autism services, both directly and indirectly, to be better able to manage interactions with patients, parents and carers and specifically around empathy and compassion being displayed by staff at all levels. The case studies show that the transition period between children's and adult services can be a particularly challenging time for parents and carers to navigate, and that communication between services and their service users/ carers is a key issue for improvement. Parent and carer suggestions for improvements are contained within the case studies and Healthwatch Enfield express their hope that these suggestions will feed in to a broader review of ASD services.

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General details

Report title 
Parent and carer experiences of Autism Spectrum Disorder Services
Local Healthwatch 
Healthwatch Wakefield
Date of publication 
Friday, 1 December, 2017
Date evidence capture began 
Monday, 1 May, 2017
Date evidence capture finished 
Monday, 31 July, 2017
Type of report 
Report
Key themes 
Access
Administration
Communication between staff and patients
Consent to care and treatment
Continuity of care
Diagnosis
Engagement
Holistic support
Information providing
Referrals
Service delivery organisation and staffing
Staff training
Support
Waiting times and lists for treatment
Other information of note about this report 
Carers
Healthwatch reference number 
Rep-6780

Methodology and approach

Was the work undertaken at the request of another organisation? 
No
Primary research method used 
User stories
How was the information collected? 
Outreach
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

Mental health services 
Learning disability service
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
Types of long term conditions 
Learning disability
What type of pregnancy or maternity themes are included in the report 
N/A

Details of people who shared their views

Number of people who shared their views 
9
Age group 
Not known
Gender 
All
Ethnicity 
All
Specific ethnicity if known 
English/Welsh/Scottish/Northern Irish/British
Sexual orientation 
Not known
Does the information include public's views? 
No
Does the information include carer's, friend's or relative's views? 
Yes
Does the information include staff's views? 
No
Types of health and care professionals engaged 
N/A
Does the information include other people's views? 
No
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? 
No
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? 
No

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.