Involving people living with mental illness in the creation of their own services

Involving people who live with mental illness in the design and delivery of their own services is undoubtedly vital to the future of mental health care. But how can we work together to ensure that co-production and efforts to address systemic inequalities can keep pace with the rapid pace of system change? Sam Holmes, head of Co-production and involvement explains:

Co-production isn’t a new concept, but in recent years it’s rightly been recognised as integral to the development of mental health services. It refers to partnership working with people with lived experience of mental illness (as well as carers and family members) in the planning, commissioning, design and delivery of services. It organises people’s lived expertise, views and ideas in the drive to improve services. It’s particularly valuable in mental health services, where so often people feel their voice isn’t heard.

In co-production, not everyone has a seat at the table of shared consideration and decision, but “lived evidence” or “lived data” is coming into the system where it is championed by peers in lived experience roles, who are valued as equal partners in the strategic co-production process.

"Co-production is undoubtedly vital to the future of mental health services, but the challenge we face now is how to ensure that co-production and efforts to address systemic inequalities can keep pace with the rapid pace of system change."

Ushering a wide range of views and experiences into decisions about service change and improvement is a big operation, and leaders, including lived experience leaders, must know how to frame the information heard, where to focus resource, and understand how information and insights can become actions which can keep up with the rapid pace of system and service change.

So how do we address that? First, we need a solid grasp of good practice and the “how” of co-production. Many systems already have established lived experience partners, reference groups and involvement functions, so the drive is now to connect on a regular basis with a wider range of people. This is why it was great to see the statutory guidance around co-production this summer, to support ongoing dialogue between the system and the people who use it. This explains how we go beyond established community engagement functions, trying new approaches and making a direct link between:

- What a wide range of people say around enquiry categories (more on this below)

- Collective lived experience priorities for strategic influencing of change

- What action happens as a result in terms of the implementation of change frameworks such as the Community Mental Health Framework, including continuous improvement of services and well as planning.

When these elements come together, we can start to tell the story of change. This means being able to go back to people and demonstrate where lived experience has had a positive influence, so they see the point of being involved and feel valued and listened to.

Second, people across the healthcare system need to know what the enquiry categories are so they can listen for the vital nuggets of information that can influence change. This is easier said than done as there are many possible enquiry fields across the NHS long-term plan, let alone all service provision, but examples include cultural factors around mental health and offers of help, the value of community support, the value of clinical/social help, and continuity of care and relationships.

"It’s vital staff know what information to listen for, make a note of, and who to share it with, as many people are not attracted to focus groups, or surveys."

Also, people in a listening role need to know what to share about support is currently available, and what’s coming. This means using commonly understood service names or locations, not the jargon of the system. Conversations must be two-way and an exchange of information needs to happen, including people who are minoritised and experiencing the highest level of social and health inequalities.

Third, and most importantly, we need to accept that co-production is vital, but it takes time. In that sense, it will always be at odds with the pace of system and service change. This is because to generate meaningful insights into people’s experience of the healthcare system, it takes time for community listeners to establish trusting relationships, time to have conversations in an appropriate environment, and time to reflect on information gathered which can be turned into valuable insights with lived experience partners.

People who have used commissioned mental health services often need time to process their experience too, so we need to go beyond current feedback mechanisms which often demand immediate feedback. Valuable insights can be unlocked when peers can safely contact them after their treatment.

"Co-production is an innovative space as we’re constantly learning and exploring how we can work together to address the knotty issues we need lived experience to solve, while striving to include people experiencing the highest levels of inequality."

We cannot and should not slow the pace of system and service change, but we can make progress in understanding the best way that co-production can be part of the current rapid transformation.

We’ve already started to see the golden thread of influence which weaves together community enquiry, insight and collective lived experience priorities to influence change and improvement across services. For example, community enquiries into the value of community resources can lead to insights around the value of voluntary or communal spaces that offer safe, connecting social environments to support people’s mental health. This establishes community spaces for connection, grounding and appropriate support as a lived experience priority which services can respond to.

Our co-production programmes have found that in order to join up community listening with strategic system influencing, you need clear frameworks for lived experience data, insight and priorities. These are essential tools for everyone working together to improve mental healthcare services, who can use these frameworks to improve focus, generate effective influence and clear action for much-needed change and improvements for people living with mental illness.

While co-production will always take time, it must be part of the rapid transformation of services. A focused and joined up approach is crucial in supporting shared decision-making which can drive positive change across mental health services.

This piece was originally published as part of National Voices’ HSJ takeover and is shared with thanks.