#SpeakUp: Asperger's Children and Carers Together (ACCT)

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Summary of report content

This is a report on research undertaken by Asperger’s Children and Carers Together (ACCT) using a micro grant from Healthwatch Sheffield.  The purpose is to hear from groups that are trusted partners in their communities to ensure that their voices are heard by decision makers.

ACCT deliver regular peer support discussion sessions for parent-carers of autistic children and young people in Sheffield. Between April and June 2021, they dedicated 7 of these sessions to exploring people’s experiences of health and social care services in Sheffield. 83 people took part in these sessions.  The aim of the discussions was to understand the experience of parent carers.

Key findings included:

  • Information about diagnosis and about relevant services and support is very important but not always easy to get
  • Peer Support provides a vital route to accessing information and support, often filling gaps left by formal services
  • Navigating the system and getting the right support can be very hard – often feeling like a battle
  • School is a challenging environment for many children and young people, and support provided is often not appropriate for their needs
  • Applying for an Education Health and Care Plan is difficult – external support (peer support, independent consultants) can make a real difference
  • Long waiting lists (for diagnosis and support) are having a big impact on families
  • Some Health and Care Professionals show good understanding of how to work with autistic children, but others do not appear to have the knowledge needed to do this well
  • Support for parent-carers – there are many challenges involved in caring, and sometimes this isn’t recognised as a responsibility over and above their parenting role. Some parents report feeling judged and not listened to by professionals.
  • At the end of our report we have also made several recommendations, which we hope will help commissioners and providers of local services to make change which will positively impact families of children with autism.

The report contains 6 recommendations about support, information, staff training, waiting times and involving parent carers.

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General details

Report title 
#SpeakUp: Asperger's Children and Carers Together (ACCT)
Local Healthwatch 
Healthwatch Sheffield
Date of publication 
Friday, 10 December, 2021
Date evidence capture began 
Thursday, 1 April, 2021
Date evidence capture finished 
Wednesday, 30 June, 2021
Key themes 
Access
Communication between staff and patients
Holistic support
Information providing
Service delivery organisation and staffing
Staff attitudes
Staff training
Waiting times and lists for treatment

Methodology and approach

Was the work undertaken at the request of another organisation? 
Yes
What type of organisation requested the work 
Other local body
Primary research method used 
Focus group
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

Primary care services 
GP practice
Secondary care services 
Psychiatry/mental health (hospital services)
Mental health services 
Child and adolescent mental health services (CAMHS)
Social care services 
Children services

Details about conditions and diseases

Types of disabilities 
Social / behavioural
Types of long term conditions 
Mental health condition
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 
83
Age group 
Not known
Gender 
Not known
Ethnicity 
Not known
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
What was the main sentiment of the people who shared their views? 
Mixed

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.