The reality of autism for young people and their families in Kent

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Summary of report content

In 2016 Healthwatch Kent released a report on the Children & Adolescent Mental Health Services (CAMHS) service in Kent. Many families and carers told them about the particular difficulties and complications they experienced when trying to get an assessment for a clinical diagnosis or for mental health support for a child who already has a diagnosis of ASD. As part of their recommendations, Healthwatch Kent agreed to undertake a piece of work to explore some of these issues in more detail.

In December 2018 Healthwatch Kent set out to understand the challenges that people on the spectrum and their carers face, and to understand what will be most helpful or needed when someone first becomes aware that they or their family member is on the spectrum, when they are diagnosed and when they have a crisis. They engaged with a total of 134 people through a combination of online surveys, postal surveys, face-to-face engagement interviews, and education professionals. 

They found parents felt high functioning autism wasn't addressed by schools well enough. Social problems were being ignored by schools and staff- parents told Healthwatch their child had problems maintaining friendships with their classmates. There was much confusion with the referral process and parents were unsure who to speak to regarding a referral. When referrals are made, there is no response from the provider to acknowledge receipt of the paperwork. Families are therefore left without any contact details or any understanding of the waiting times. Parents are not signposted to local support groups or local activities to nurture their autistic child. 

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General details

Report title 
The reality of autism for young people and their families in Kent
Local Healthwatch 
Healthwatch Kent
Date of publication 
Thursday, 15 August, 2019
Date evidence capture began 
Monday, 10 December, 2018
Type of report 
Key themes 
Booking appointments
Communication between staff and patients
Continuity of care
Holistic support
Information providing
Integration of services
Lifestyle and wellbeing
Service delivery organisation and staffing
Staff attitudes
Waiting times and lists for treatment
Healthwatch reference number 

Methodology and approach

Was the work undertaken at the request of another organisation? 
What type of organisation requested the work 
Primary research method used 
Engagement event
How was the information collected? 

Details of health and care services included in the report

Primary care services 
GP practice
Mental health services 
Child and adolescent mental health services (CAMHS)
Mental health crisis service

Details of people who shared their views

Number of people who shared their views 
Age group 
Specific ethnicity if known 
Sexual orientation 
Does the information include public's views? 
Does the information include carer's, friend's or relative's views? 
Does the information include staff's views? 
Does the information include other people's views? 
What was the main sentiment of the people who shared their views? 

Outcomes and impact

Were recommendations made by local Healthwatch in the report? 
Does the information contain a response from a provider? 
Is there evidence of impact in the report? 
Is there evidence of impact external to the report? 

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.