Summary of report content
Healthwatch Bromley, working in partnership with the London Borough of Bromley Commission lead for Autism, developed a small but detailed survey to gain a greater understanding of the Autism care pathway in Bromley. 40 people completed the survey during the period November 2019 to January 2020.
Over half reported receiving the ASC diagnosis, by health care professionals, within the first year of seeking a diagnosis. A significant number waited more than one year, and some up to four years.
One third stated they had been misdiagnosed before receiving their formal diagnosis. There were mixed experiences once a formal diagnosis had been received. In some cases, it enabled easier access to services and support. Others experienced lack of involvement in their care and treatment and varying levels of stigma, discrimination and neglect across health, social care, and educational settings. This highlights the need for greater training, awareness and understanding of Autism across health, social care, and educational service pathways, particularly in mental health services, schools, and colleges.
Over half reported a lack of support and assessment for their care needs. Increased access to employment opportunities and social activities were highlighted as key areas requiring improvement. Some had recognised the benefits of receiving support services through the direct payments schemes but reported these services were often outside the borough boundaries. Another area that required particular attention and improvement was some families’ experience of long waiting times to access support services. Some also mentioned the need for carer and advocacy support.
There were significant levels of unmet needs for those who failed to receive an assessment of their care needs. This resulted in parents feeling that they were living without any adequate support from the borough and that their adult children with Autism were fully dependent on them for support. Concerns were also raised about the mental wellbeing of elderly carers and the long-term impact of isolation on both the individual and their families. Some also expressed frustration about the lack of reasonable adjustments in primary care services and some felt that professionals failed to understand, listen to, or respect their needs. This suggested that there was a particularly poor understanding of ASC across care pathways including acute mental health care settings.
The lack of service support when children transitioned from young people services into adult services was also identified as a gap in service provision for young people with ASC. Support with travel and carer support, alongside poor communication in providing information and signposting, were also highlighted as areas some families found difficulty in accessing.
Overall, around one third responded to the question on accessing a range of the health, community, and social care services. They reported a mix of positive and negative experiences. For some, the services they had accessed had been beneficial supportive and helpful, whereas, for others, it had left them feeling misunderstood, disempowered, and isolated, with a lack of appropriate support.
The report contains 4 recommendations about social opportunity, user involvement, the impact on parents and carers and communication.