Co-production & Trainers with Lived Experience
The Oliver McGowan Mandatory Training is grounded in the ethos of co-production. From concept through to delivery, the aim is to lead by example including the individual and their unique perspectives at the heart of the training.
In close collaboration with Paula McGowan (Oliver’s Mum), NHS England worked with a number of charities and advocacy groups, including MENCAP and the National Autistic Society to design the training package. In a spirit of equal relationships, the entire process has included co-production with experts of lived experience of learning disability and/or autistic people.
Find out more on the links below.
In South Yorkshire the ICB team work collaboratively with local partner organisation, Speakup Self Advocacy who share a mutual commitment to working together to ensure ongoing best practice and improvement of the co-production process from co-design to co-delivery.
Based in Rotherham and established in 1988, Speakup is an organisation run by and for people with learning disabilities and/or autistic people. They provide peer support and self-advocacy services and all their work is co-produced.
As an organisation they have worked to ensure people with lived experience of learning disabilities and/or autistic people are at the centre of plans on local, regional and national levels. Their work is pioneering and has shaped national programmes to tackle health inequalities, such as LeDeR and the Mental Capacity Act.
Advocacy | Speakup Self Advocacy | England
In December 2023 South Yorkshire ICB commissioned Speakup to carry out the recruitment and employment of facilitating trainers and experts with lived experience co-facilitators. Several of the facilitating trainers are autistic.
Initially, existing members of staff were trained to deliver the tier 1 training and in March 2024, 17 new experts with lived experience were recruited into the organisation as co-facilitators to build capacity for the tier 2 delivery. A co-produced recruitment process was used including adjusted processes and involvement of existing experts by lived experience at all stages.
In line with the philosophy of co-production there is a focus from the ICB and Speakup around supporting peoples’ mental health and wellbeing which needs to be bespoke and dynamic in nature.
For some people this is their first paid job, others span multiple generations of the same family, and one has an MBE in recognition of their work to break down barriers faced by people with learning disabilities. Many of the recruits have expressed how their lives have been transformed for the better through their involvement in the programme.
As a South Yorkshire team, we are delighted to be working with a diverse range of passionate individuals who share their lived experience expertise, knowledge and insights to ensure the training is more powerful and engaging.
The South Yorkshire ICB team carry out the programme management of the training following the guidelines of the NHS model of co-production as outlined below:
“Co-production acknowledges that people with ‘lived experience’ of a particular condition are often best placed to advise on what support and services will make a positive difference to their lives. Done well, co-production helps to ground discussions in reality, and to maintain a person-centred perspective.”
NHS model of co-production visual:
The Care Act 2014 referred to the importance of co-production
People not process: co-production in commissioning – Social care
The wider Learning Disability and Autism Team at the South Yorkshire ICB has worked strategically with all system partners on other projects to tackle health inequalities associated with people with learning disabilities and autistic people.
Pen portrait of an autistic expert co-facilitator
Personal details:
- Diagnosed as a child with autism and ADHD
- 27 years old
- History of anxiety & low self-esteem
- First paid job. Signed up to scheme with City Council Sheffield Supported Employment, supported by a job coach.
Highlights of the role:
- Feels good to see doctors and nurses writing things down when I am talking about reasonable adjustments that help me.
- Knowing what you're saying is having a direct impact feels good.
- Working with other people who “get it”.
- It’s been a confidence booster and got me thinking more about the future
“I feel energised and I am feeling more confident as you feel that the delegates are taking it in.”
Pen portrait of an expert of learning disabilities co-facilitator
Personal details:
- Diagnosed with a learning disability, dyslexia and short-term memory problems.
- 52 years old
- Years of paid work including training on:
- accessible information
- sexuality
- employment
- hate crime
- public speaking and inclusion worldwide
- peer to peer support for social workers
Highlights of the role:
- Getting lovely feedback; a lady came up to me and said I am a role model for people with learning disabilities, she has a child with Down’s syndrome.
- I can be myself and feel free to talk about my lived experiences.
- Being able to swap my days and work flexibly.
- Feeling included and I enjoy working with my colleagues.
“I feel respected and now feel like an equal in health care and social care.”
