The NHS England/Improvement short term funded project took place over three months in 2021 and aimed to engage local autistic people and their families.
About
The NHS England/Improvement short term funded project took place over three months in 2021 and aimed to engage local autistic people and their families in discussions on two issues. The first was to get their experiences of the post autism diagnostic pathway and the second, to find out what would enable participants to continue to contribute to longer term engagement, focused on improving local services.
The project successfully reached several autistic people who had not previously engaged with the council and the work contributed to both the improvement of local autism services and more permanent co-production structures for the locality.
The challenge
The first challenge was how to engage a wide range of local autistic people in service improvement, making sure that the diversity of local communities was represented, and that new people were engaged with.
The second challenge was to elicit a picture of people’s experiences with a balanced focus on experiences that were likely to have been difficult for many, with suggestions for improvement. The third was to enable those who took part who wished to continue to do so were retained, despite the project’s funding ending. We know from our past experience that organisations often lose contact with experts by experience within the first year.
The solution
It was decided from the beginning that bringing in an independent person with autistic lived experience from outside the area would be more effective and potentially attract a wider group of local autistic people as they would have no preconceptions about local communities or services. The external autistic lead could also advise on how best to connect and communicate with local autistic people and which formats to use, or reasonable adjustments to make so that people are better able to take part.
An autistic friendly e-flyer was developed and distributed to known local groups, to wider online groups of autistic people and families, across statutory services and to the local media. A series of online discussion sessions using Zoom were advertised on different days and at different times so that those who wished to join could choose one most appropriate. Sessions were delivered in an autism-friendly manner with people choosing whether to have their camera’s on, with an option to type responses rather than talk, breaks built in for processing time, or having an advocate to relay their perspective on their behalf, to name but a few examples. One to one phone sessions were offered to anyone who either found talking in groups difficult or who wanted to relay very personal stories. The Autism Officer spent time talking to potential participants about the process, making expectations clear, answering questions, and reducing potential anxiety. They also asked if any reasonable adjustments were required by potential participants to enable them to take part. The key discussion questions were sent out in advance to allow for processing time. Sessions were led by the autistic lead and supported by the council’s Autism Officer.
The autistic lead was employed as a consultant and was responsible for collating the information from the participants and presenting it back to the council as an independent report, with recommendations for improvements to the post diagnostic support that local people received and on how best to improve local co-production structures. The original participants received the collated information and were given opportunities to correct or add information before the report was submitted to the council.
The Autism Officer continues to lead this work across the local health and social care system with projects which were already in development or were set up as a result of the engagement with autistic people. Examples include improving the provision of information and advice for autistic people and the extension of the Autism Partnership Board membership to include the Voluntary and Charity Sector, to be more representative of the local autistic community, and work on improvements in the support given to experts by experience.
The Impact
Working in partnership with the Leicester City Lead Commissioner, the project outcomes have been shared with key local health and social care teams, such as specialist autism and neurodiverse operational and diagnostic teams within NHS Leicestershire Partnership Trust. Outcomes were also presented to the Leicester City, Leicestershire, and Rutland Autism Partnership Board.
A system wide Autism Workshop was facilitated by the lead commissioner to bring key stakeholders together to share local good autism practice, service developments and the co-production project outcomes. Attendees were updated on autism service development plans, supporting coordinated delivery and partnership working. The NHS Leicestershire Partnership Trust are utilising the co-production feedback to develop autism post diagnostic workshops for autistic people and families.
Considerations and lessons learnt regarding virtual co-production with autistic people and families has been presented to a range of organisations including commissioning teams, Skills for Care and the NHSE/I Midlands Autism Workstream.
How is the new approach being sustained?
The external autistic lead has been retained to support the initiatives that came from this project for a further period using NHSE Learning Disability and Autism Champion monies, alongside specialist input from a BAME Learning Disability and Autism Champion. All but one of the original contributors continue to be involved, supported by the council Autism Officer, who also continues to work in partnership with operational colleagues with the service improvement initiatives.
Lessons learned
The project was successful for a range of reasons. The autistic expertise in all aspects of the project brought independent thinking and an ability to suggest ways of doing things differently to reach and engage local autistic people. Strong partnership working across social care and health, the local Voluntary and Community Sector (VCS), including the Leicester, Leicestershire and Rutland (LLR) Autism Partnership board enabled the recruitment of local people to the project. Trust and confidence was built with the Autism Officer prior to joining the project, and expectations about the process were made explicit throughout.
We learned how to reach and communicate with autistic people although we felt that an approach using Speech and Language specialist knowledge, alongside offering people to contribute in more creative ways, would have engaged more nonverbal autistic people. Support also needs to be provided for those participating.
Reimbursement for contributions can vary from locality to locality and spending time with people before, during and after meetings is also a worthwhile investment. It’s helpful to let autistic people who contribute stories know that a debrief to discuss the potential impacts of revealing their stories is on offer and a check for any unmet needs. We think this can also increase participation numbers and retention.