Long Term Plan Greater Manchester Autism Report

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Summary of report content

Greater Manchester conducted an investigation in partnership with voluntary and community sector organisations as part of the NHS Long Term Plan (LTP) network-wide project. This project was commissioned by NHS England. The objectives of this report was to gather, analyse and present a comprehensive set of responses from the people of Greater Manchester on some of the key the topics raised in the NHS Long Term plan. This report focuses on the patient's journey in autism services. They received 29 useable surveys. A further eight people participated in one focus group.

People responded from eight of the ten areas of Greater Manchester; Trafford, Stockport, Rochdale, Bolton, Bury, Manchester, Tameside, and Wigan and Leigh. 86% of respondents were female. 

52% of people, which was the biggest percentage group, described their overall experience of getting a diagnosis as negative. 46%, which again was the biggest group, described their experience of getting support as negative. They compared waiting times with overall experience scores and found that there was a strong correlation between waiting times and negative experience in this group. In terms of time from first presentation to diagnosis, it took over a year months to receive a diagnosis for more than three quarters of respondents (76%). In terms of time from diagnosis to receiving some form of support 64% waited over a year from their time of diagnosis to receive support.

A common theme of the responses to what could be improved was information and guidance. People described a dearth of relevant, up to date information about the condition and the support available. Lots of respondents called for improved levels of awareness of autism particularly among linchpin professionals (CAMHS staff and GP’s) who have the power to make referrals and who are charged with providing support. Many people felt that they had not been listened to at some point during the process of trying to get a diagnosis. Parents in particular felt that they had been railroaded by professionals who did not know their children and possibly did not have a detailed understanding of autism.

From the report findings, Greater Manchester recommended that early intervention, social prescribing, personalisation, and better use of technology would improve a person's journey in autism services. 

This report contains a response from the Greater Manchester Health and Social Care Partnership (GMHSCP), whereby they verbalise their appreciation for these findings. The themes from the Healthwatch Survey align very closely with the priorities of the programme. In reference to the areas of recommendation, the GMHSCP responded that these suggestions could be explored within the implementation groups developed or additional work streams could be created if they do not clearly fit with the existing priorities

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General details

Report title 
Long Term Plan Greater Manchester Autism Report
Local Healthwatch 
Healthwatch Bolton
Healthwatch Bury
Healthwatch Manchester
Healthwatch Oldham
Healthwatch Rochdale
Healthwatch Salford
Healthwatch Stockport
Healthwatch Tameside
Healthwatch Trafford
Healthwatch Wigan
Date of publication 
Tuesday, 14 May, 2019
Date evidence capture began 
Monday, 4 March, 2019
Date evidence capture finished 
Friday, 26 April, 2019
Type of report 
Report
Key themes 
Access
Booking appointments
Communication between staff and patients
Diagnosis
Digitalisation of services
Information providing
Quality of appointment
Quality of care
Quality of treatment
Service delivery organisation and staffing
Staff attitudes
Staff levels
Support
Waiting time to be seen once arrived at appointment
Waiting times and lists for treatment
Healthwatch reference number 
LTP-19

Methodology and approach

Was the work undertaken at the request of another organisation? 
Yes
What type of organisation requested the work 
Other government body
If this work has been done in partnership, who is the partner? 
NHS England
Primary research method used 
Focus group
Survey
How was the information collected? 
Research

Details of health and care services included in the report

Mental health services 
Learning disability service

Details of people who shared their views

Number of people who shared their views 
37
Age group 
All
Gender 
All
Ethnicity 
All
Specific ethnicity if known 
All
Sexual orientation 
Not known
Does the information include public's views? 
Yes
Does the information include carer's, friend's or relative's views? 
Not known
Does the information include staff's views? 
No
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? 
Yes
Does the information contain a response from a provider? 
Yes action has been taken or promised
Is there evidence of impact in the report? 
Yes
Is there evidence of impact external to the report? 
Yes
What type of impact was determined? 
Implied Impact
Network related impact

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.