Neurodivergent lived experiences, co-production, and the future of mental health services
To coincide with our involvement as a delivery partner in NHS England’s Culture of Care programme, Cassie Lovelock details the benefits of co-production as a powerful tool for reforming mental health services in a neurodivergent-affirming way.
In the UK, there are exciting changes happening in how we approach research, policy making, service design, and service improvement. For a long time activists have been working towards including the perspectives of those with lived experience, and this value becoming increasingly important in health and social care systems. Organisations like NHS England, the Royal College of Psychiatry, and local mental health systems have been actively making efforts to involve people with lived experience in their work, using methods like co-production. But how does this extend to the neurodivergent community?
Co-production is one of many ways we involve people in service design and improvement in health and social care services. It means that those who are in positions of power and influence make efforts to share that power; centring the voices of those who have lived experiences related to the specific topic at hand. At the core of co-production is the idea that the service user's voice is present in every stage of an idea, from conception to implementation and evaluation. It challenges those in power to think differently and ensure that their actions are relevant to the communities they serve. The aim of co-production is to ensure decisions are not solely made by civil servants and NHS leaders, but by all of us who live with these experiences every day.
Despite significant use of mental health services, the neurodivergent community is often left out of efforts to involve service users in co-production. This could be due to barriers such as limited access to us or a lack of knowledge and understanding on how we present in the mental health system, or classic deeply misunderstood questions about our capacity. Additionally, the usual challenges of time, money, capacity, and safety can also hinder meaningful participation.
As we see changes happening in health and social care systems, it is crucial to consider how we can effectively involve neurodivergent communities. Autistic individuals and those with ADHD are often expected to conform to neurotypical standards in a society that is not designed around our needs; meaning doing co-production with health systems becomes all the more exhausting, difficult, and draining. Plus those with other neurodivergences such as Tourette’s or dyslexia are also rarely invited into co-production spaces. By identifying the obstacles to co-producing with neurodivergent folk, we can find ways of being meaningfully involved in efforts to improve health and social care systems and ideally these efforts will lead to systems which centre the needs of neurodivergent communities.
Getting involved in health and social care transformation can happen at various levels, from national programs like those led by NHS England, to regional initiatives, and even local programs within your own GP surgery. It can be daunting to turn up in a space and talk about the intimacies of your life in the health and social care system, but you’re not there to prove yourself, you’re the expert and you’re there to help the system. Set boundaries around what you’re comfortable with people knowing and stick to it.
We can only change the mental health system in a neurodivergent affirming way by making our voices heard and with the current changes coming now is an ideal time to get involved.
