NNPCF - Real Co-production with Parent Carers

The National Network of Parent Carer Forums was recently asked to speak at the Royal College of Speech and Language Therapists national conference, about how real co-production transforms services and outcomes.  There was a pleasing symmetry in an organisation which gives people a voice, talking about co-production to those that enable individuals to communicate, but that aside, the presentation shared the experiences of Parent Carer Forums in the North East Region coproducing the design and delivery of the Transforming Care Accelerator Project.

The Accelerator project built on a recognition in the North East of the lack of focus in the Transforming Care Programme on children and young people and their families, in particular a lack of their voice in the strategic planning of activity.  Once this had been identified plans were put in place to link with Parent Carer Forums in the region, to provide this strategic voice, which sounds simple…. but inevitably nothing is that straightforward. At the heart of successful co-production are strong and equal relationships, based on understanding and a shared language.  This doesn’t happen overnight and requires a commitment to, and investment in, developing an environment and knowledge base that can deliver such relationships.  None of which is easy in the current circumstance that we are all working in. 

This work started with asking the Parent Carer Forums a simple question, based on what their community was sharing with them, what did a good life for SEND families look like?  It is essential for co-production, to understand what good looks like from the perspective of those impacted by the situation you are looking at.  After all you can’t plan a journey without knowing your intended destination.  Then we spent some time building the Forums’ knowledge of how the health system works, the aims of Transforming Care and the barriers faced in delivering the agreed outcomes.  There was also an investment in introducing health colleagues to Parent Carer Forums, the representative model they use and how to work effectively with parent carers.  This included developing a recognition of how complex the lives of parent carers often are and the benefits (an understanding and experience of the wider system) and the challenges (parent carers are very busy people) this brings. This was the base from which the required relationships could grow.

Once that foundation was established we were then able to move forward and when the region was asked to bid for the Accelerator it meant that the project that was developed reflected and responded to the views of parent carers right from the start.  At its core it addresses an issue that families had told us was central in their day to day life; that issues faced by them and their children were too often not being responded to soon enough and being left until they became major challenges that required significant changes and resources to address. This also reflected what national data was telling us and is one of the key reasons that young people with autism without a learning disability, are the fastest growing group of young people being admitted to inpatient and residential settings.  So, we asked families ‘what good looked like’, listened to what needed to change and worked in partnership to develop a response, all enabled by developing a relationship where we shared an understanding of each other’s lives, language and needs.

This was the start of our journey, and the basis for real co-production which has gone on to deliver real change for families and practitioners alike.  A development programme has been created for mainstream schools that delivers an environment and culture that responds to the needs of autistic students right from the start.  Families are being brought together to share information and to provide support to each other, reducing isolation and building confidence to work in partnership with schools.  Young people are being supported to explore the strengths and challenges that autism can bring, and everyone is being encouraged to think about how they can be part of making a difference. We have provided an ongoing opportunity to strengthen relationships between Parent Carer Forums and practitioners from all services through the creation of a Peer Network, where parent carer representatives and practitioners from health, education and social care can come together to learn from each other and to explore best practice. 

We can see from this experience that real co-production isn’t a one-off event, it is a way of working that becomes organic within the relationships built between individuals and therefore the organisations and community groups they represent. It is a process that we all need to commit to, investing our time and efforts, with an open mind and a willingness to change and only then will we deliver real and meaningful change, for those we all support.