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Adults with autism in Gloucestershire

by | Feb 10, 2023 | Healthwatch Gloucestershire, Local Healthwatch

A new report by local health and social care champion, Healthwatch Gloucestershire, highlights the experiences of adults with autism who have sought to access the autism assessment service in Gloucestershire.

The report identifies key issues and areas for improvement in the health and social care pathway for autism and provides recommendations for health and social care providers.

Key themes that emerged from the report include a need for better information, communication, awareness, and support. People who sought support for autism reported difficulties in navigating the health and care process and understanding what to expect and when. They also commented on a lack of awareness and training about women with autism, and the poor support provided while waiting for assessment, and after assessment and diagnosis.

The report makes several recommendations for improvement including that health and social care services provide everyone who seeks support for autism with a clear outline of the process from referral to assessment, diagnosis, treatment, and support. A wider range of support options are advised to meet different people’s needs, including advocacy to assist adults with autism in the workplace and with medical appointments, and workshops outside of working hours. Healthwatch Gloucestershire also recommends those responsible for providing the autism service should involve people with autism to help develop and improve the service.

Healthwatch Gloucestershire’s report is based on in-depth conversations with 15 people, an online survey with 12 responses, and online research. The powerful personal stories featured in the report include Julie’s story of autism diagnosis in her 60s: “It felt like a new beginning and I had permission to be me. I have always thought I was not good enough and it has improved my self-esteem”; and Aaron’s story of how his child’s struggles led to his own diagnosis after “a lifetime of feeling out of phase and not understanding why friendships were so awkward. Having this diagnosis has enabled me to peel the mask away and be myself.”

Suzie Compton, who led the project for Healthwatch Gloucestershire said: “We have been hearing from local people that waiting times for adults to be assessed for autism have increased. We know that waiting a long time for assessment and care can be extremely difficult, and it’s important for services to communicate well and support people while they wait.

“By sharing their personal and moving stories with us, people have shown the many challenges they face as they seek help to understand, diagnose and manage their autism. They have highlighted where improvements are needed in Gloucestershire’s autism service and how changes could have a powerful and positive impact on the lives of people with autism and those who love and care for them.”

Healthwatch Gloucestershire has shared the report with the Gloucestershire Health & Care NHS Foundation Trust and with organisations involved in the autism service, to help them develop and improve care and support for adults with autism in Gloucestershire.

In the report, John Trevains, Gloucestershire Health and Care NHS Foundation Trust, Director of Nursing, Therapies & Quality Director of Infection Prevention & Control, comments on the increased demand for autism assessment, and he welcomes the report and sets out what is being done to address the issues raised:

“The Autistic Spectrum Condition (ASC) assessment service is experiencing an unexpected and unprecedented number of referrals following the Covid-19 pandemic and the demand for the service significantly outweighs the current service capacity and the original commissioning parameters of the service. The Gloucestershire ASC service is currently commissioned and resourced to provide 100 diagnostic assessments per year which equates to approximately two referrals a week. However, the service actually receives on average 572 referrals per year which equates to 11 referrals each week. This is a 77% increase in referrals from pre-pandemic levels. Sadly as a result, the current waiting times are on average 3.2 years which we do recognise is far too long for people seeking an assessment.

“We very much welcome this report from Healthwatch to help improve services in Gloucestershire. Feedback from people who use this service and community partners is invaluable to help us learn and better identify the needs of our local communities. We are aware that many people have been waiting a significant length of time for contact with the (autism) service and for this we apologise. The points highlighted regarding the areas of need have been considered in detail and will help us. with commissioning support, to build on the service that we provide.”

Read the full report which includes local people’s stories and a full response from Gloucestershire NHS Foundation Trust about the changes they will be implementing to improve the service: Adults with autism: People’s experiences of the autism assessment process in Gloucestershire

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