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