First Phase Involvement Summary Feedback – 2023/24

We are currently in the midst of developing of a new borough-wide all-age local Autism Strategy to cover the next five years.

  • Central to the development of our local strategy is to listen, learn, and capture the views of local people who have lived experience of autism as well as their family members and carers from across Barnsley and additionally from the professionals and organisations who provide support services for children, young people and adults with autism along with their families to shape this as well and the accompanying action plan that will be developed to run alongside this. 
  • During the end of 2023/ early 2024, we ran an initial public involvement phase across the borough to gain views, experiences, and feedback to feed into the development of the first draft of our local strategy.
  • Thank you to everyone who has taken the time to get involved and share their views and feedback with us so far.  It is hugely appreciated.  
  • Below is a summary of the process we undertook, the methods we used and the feedback we received along with revised timescales for next steps. 

Our new local strategy is being developed to reflect the national all-age Autism Strategy and accompanying implementation plan/ policy guidance that was published in 2021. 

In the national strategy for autistic children, young people and adults: 2021 to 2026­ published 21/07/21, the following six key areas have been highlighted as those that would have a significant impact on people with autism's lives:

  1. improving understanding and acceptance of autism within society

  2. improving autistic children and young people’s access to education, and supporting positive transitions into adulthood

  3. supporting more autistic people into employment

  4. tackling health and care inequalities for autistic people

  5. building the right support in the community and supporting people in inpatient care

  6. improving support within the criminal and youth justice systems

Over the past few months, we have formed and been working with an Autism Strategy Stakeholder Group which includes young people and adults with lived experience of autism, parents and carers of children and young people with a diagnosis of autism and professionals from groups/organisations who provide support services for children, young people and adults with autism, along with their families to develop our collective involvement approach to capturing views, feedback and experiences from our wider communities to shape the development of our local strategy.

We collectively planned and held several local drop-in events and sessions during November and December 2023 across the borough.  This enabled local people and organisations to be able to attend and share their views and experiences directly with us in relation to the six key themes highlighted above as part of the national strategy. In addition to this we have also been promoting our local survey and 1:1 feedback form which has been designed by the stakeholder group members throughout this time as a way for people to be able to provide us with their experiences and feedback too.

We have also been working with local organisations and services across the borough during this time to link into existing groups and opportunities to gain their views and experiences.

There were several ways in which people could get involved and share their experiences with us throughout our initial involvement phase, which ran from November 2023 until January 2024. 

They could either -   

  • Fill in our feedback survey which was made available both via an online link and via hard copy for people to be able to return via freepost
  • Provide feedback to us directly via email or over the phone
  • Attend one of our four larger community drop-in events held during November and share feedback and experiences with us in person or come along to one of our seven local drop-in sessions held throughout November and December and get help completing the feedback survey in person.

All of the details were made available on the ICB ‘Get Involved’ page of our website, promoted via the ICB social media channels, advertised in the Barnsley Chronicle via both the print and online versions through both paid for advertisements and media releases, and also promoted via our local statutory and community partner organisations through their networks and bulletins.

A communications toolkit was developed and provided for all partner organisations which included posters, content for both internal and external bulletins, and content and graphics for social media posts.  This was updated and circulated several times throughout the initial involvement period. 

Summary of feedback received in relation to the six key areas of focus for the strategy

  • As part of the survey, we asked people a number of questions in relation to each of the six themed areas and for them to describe their experiences in their own words as part of a free text response.
  • In addition to these we asked for feedback to a number of multiple-choice questions relating to each of the six themed areas as well as for them to describe how each topic currently made them feel based on their experiences.
  • All of the questions were developed and agreed with the stakeholder group, and we agreed to take a similar approach at our larger scale drop in events to gaining comments and feedback.
  • With this in mind, we agreed on a method whereby people could provide their comments and feedback relating to each of the six themed areas by writing these on a corresponding shape for each area (leaf, butterfly, building block, person, speech bubble and flower).
  • We also asked for people to indicate how each of the six themed areas made them feel by placing a token into the corresponding bucket that was placed on each of the six tables that we had at each event.
  • ​​​Due to the sheer size and number of comments and feedback received, we have themed these and included sample comments into a first phase involvement summary report for brevity.  
  • A copy of the report will be available to download soon here and this will also be shared directly with everyone who provided their contact details with us as part of their feedback.  

Throughout November and December, we held four large community drop- in events and seven community drop- in sessions where people could attend and provide their feedback and get help filling in the survey.

In terms of numbers, initial feedback highlighted that we received over 300 survey responses throughout our initial involvement period. 

Over 100 people attended one of our four larger public drop-in events held throughout November 2023 and provided comments and feedback in relation to each of the six key themes highlighted previously that our local strategy will focus upon.   

We’ve also had more detailed 1:1 feedback from a small number of people that attended one of the seven drop-in sessions held in each of the neighbourhoods at one of our local family centres throughout November and December.

As part of our survey, we asked people to answer a set of optional equality monitoring questions and the breakdown of responses is as follows.

Who respondedNearly half of the total number of the total number of survey responses received to the survey came from a Parent/ Carer of a child/young person with an Autism Diagnosis (aged under 25) – 48.68% (111 people)

This was followed by those people identifying themselves to be a Parent/ Carer of a child/young person awaiting an Autism Diagnosis (Under 25) – 17.98% (41 people) and professionals who work with autistic people -16.67% (38 people).

Age - All age ranges were represented as part of the feedback.

Over half of the total number of responses to this question came from people aged 31 to 50 years old – 55.69% (126 people)

Gender - The majority of responses to the survey came from women– 85.40% (193 people).

Sexuality - The overwhelming number of responses to this question came from those people who self-identified as being straight/heterosexual – 87.17% (197 people).

Disability - The slight majority of responses to this question came from those people who highlighted themselves/ the person they care for as having an additional physical or mental health condition in addition to autism – 48.89% (110 people) and of those people, who provided a response to the associated question regarding type of disability, over 40% of respondents highlighted a mental health or psychological disability – 42.11% (80 people) and this was closely followed by a sensory disability – 38.95% (74 people)

Area of the borough that people live in - All locality areas of the borough have been represented as part of the feedback received and of those people, who provided a response to this question, the majority indicated that they live in the central locality area – 25.66% (58 people) and this was closely followed by the north-east locality area – 21.68% (49 people) and south locality area – 19.47% (44 people) 

Proposed Next Steps 

  • All of the collated feedback from the surveys and drop-in events and sessions has been shared with and is currently being used by the programme leads to shape the development of the initial draft strategy document. 
  • Feedback from first phase involvement has been shared with our local Stakeholder Group members and they are involved in helping to shape the development of the initial draft strategy document. 
  • We are currently aiming for the first draft version of the strategy to be completed by end of Summer 2024.
  • A second phase of involvement is currently being planned and we are aiming for this to carried out during later Summer/ early Autumn to seek views and feedback on the draft strategy.  
  • The draft strategy will then be revised following further feedback prior to being launched later in the year. 

For more information 

If you have any queries or would like to access any of the information above in an alternative format, get in touch with us via the contact details below: 

  • Email us at syicb.involve@nhs.net using the subject heading 'Barnsley Autism Strategy'
  • Call us on 01226 433779 (9 am - 5 pm Monday to Friday)