Involving people with lived experience

West Yorkshire Health and Care Partnership’s neurodiversity programme understands that meaningful, effective involvement of people with lived experience is integral to the improvement and development of our services.

As part of this work we have invested in coproduction; ensuring that decisions, resources, changes and recommendations are produced in partnership with the communities we serve. Our aims and outcomes reflect the knowledge, experience and skills of experts by experience, as well as experts by profession. United we are stronger.

We have brought together people from across many sectors including primary and secondary healthcare, education, social care, commissioning, local authority, VCSE sector and advocacy, people with lived experience of neurodivergence including children, young people, adults, parents and carers - many of whom span both expertise by profession and by lived experience.

How have we done it?

Hundreds of people have been involved in this work from both professional and lived experience backgrounds and to enable everybody to have input (given the volume of people involved) we have had a number of different forums and working groups.

This diagram shows who makes up each of the working groups and how those working groups feed into the wider work. Our steering group is made up of representatives from all the working groups as well as those in senior roles with the means to turn agreements into action. There are people with lived experience in all of the groups and forums.

As part of this work, we were lucky enough to have two lived experience ambassadors in the form of Dr Gill Loomes and Ella Tallon whose role it has been to compliment or represent our lived experience network between different meetings, working groups and events as well as acting as a sounding board to check, challenge, support and reflect on the work of the neurodiversity programme.

Our co-production lead Rhiannon (who is also neurodivergent) has been in place to coordinate the involvement of those with lived experience across all areas of the project. Rhiannon works for the VCSE organisation Touchstone, which is a mental health and community charity. An advantage of this is that she has been able to access communities that would be harder within the traditional NHS system, whilst still working very closely with the MHLDA team and partners.

Our ambassadors and co-production lead being a part of the MHLDA team has been key to maintaining involvement and co-production with neurodivergent communities across West Yorkshire.

Our latest co-production work has been the workplace reasonable adjustments. Watch the animation below for more:

Workshops and community

Different people communicate and prefer to contribute in different ways, particularly in the neurodivergent community. To reach out and be reachable to people, we have used a diverse range of methods.

These have included regular and ad-hoc online meetings, in person meetings, creative workshops, workshops in education settings, surveys, questionnaires, and case studies. We are accessible by phone-call, text, WhatsApp, email or meeting in-person. We have visited community groups and projects so people can co-produce in settings they are familiar and comfortable with.

How have people been involved in co-production?

When people have expressed interest in involvement, we try and meet their needs bearing in mind their existing commitments, priorities, communication styles and needs. There are multiple ways people can feed into this work. You can read more about ways to get involved.

Language

People with lived experience have collated and co-produced some resources and guidance about how we approach language around Autism and ADHD. This includes language and terminology, as well as the ways we speak about autism and ADHD, and the impact this may have on neurodivergent people.

Watch this helpful video on the right language for neurodivergent people.