Involving people with lived experience

When referencing Neurodiversity Summit's, this is in relation to the 2023/24 two Neurodiversity Summits with the aim to bring diverse voices together to identify common ground and share the challenges our sectors face in supporting the neurodivergent population. The way that our usual support offers are configured often do not meet people’s needs and within healthcare there are huge capacity issues limiting the ability for people to receive a timely formal ADHD or Autism diagnosis. Find out more about the Summits on the webpage.

"I think some of the changes are probably quite small, but have had a big impact on people, it's really powerful when you are sitting in those summits and people have that face-to-face time with professionals. People have stood up and obviously got quite emotional about their story that that does need an arena to be to be heard. Those have been really powerful moments for me, when somebody stood up and it's not, it's not, you know, a person's NHS number or this case study or whatever. It’s a person. There are desperate parents or a person who's gone through a really bad time just to get what they need and deserve. Things like that have been really powerful to get those people in the room, and I think that's probably had a big impact." - the impact of a lived experience presence at the Summits.

"The first time was in a room, the acoustics are awful and people really struggling and they changed. So the second time, we had the second summit, we changed the format slightly and we couldn't change the venue, but we changed the structure of the day to accommodate for that difficulty." - acting on feedback from the summit to improve inclusivity.

"One of the biggest things that we we've done is actually having those, setting up those subgroups to discuss, right to choose providers and shared care. I mean, I don't know compared with other part other ICB's, you know, other parts of England. Is anybody else having these sorts of conversations?" - including the public in ICB discussions and decision making.

"Amplifying the voices of parents/carers and individuals themselves to help steer and shape the work has been extremely impactful, it allows the work to be person led as well as person focused." - on what has been the most impactful part of the co-production experience.

"I like to think it has helped to promote individual voices within a diverse demographic who can be homogenized in discussions" - co-production evaluation comment.

"Working closely with people with lived experience and acknowledging them as equals in this programme has impacted positively on the outcomes" - co-production evaluation comment.

Reasonable adjustments:

These reasonable adjustment twin guides for employees and employers include useful information on how reasonable adjustments can support neurodiverse colleagues in the workplace.

• For employees
• For employers

Language:

People with lived experience of Autism and ADHD co-produced this zine around language used in relation to neurodivergence.

An Autism and ADHD language guide for professionals to support neurodivergent colleagues.

Social understanding:

Autistic and ADHD poets, writers and a photographer co-produced this poetry anthology to try and bridge the gap of understanding between neurodivergence and neurotypicality.

• Call to action flyer​
• Neurodiversity Summit access guide
• Children and young people flyer
• Autistic and ADHD Adults flyer
• Workshop invitation
• At the West Yorkshire Neurodiversity Summits, we worked with a lived experience representative at Touchstone to create a visual accessibility guide for attendees to help them understand what type of surroundings, sights and experiences they would likely to encounter when attending. We received a good amount of positive feedback from this work with this being shared as a good example across the Partnership. ​​​​