‘Them and Us’ - Why coproduction and patient leaders will change the NHS by Professor Becky Malby

September 2016

Passionate about user centred design, Cynergy have been working with Professor Becky Malby in recent months to develop an approach which puts people at the heart of solving the challenges facing
society and empowering them to be active citizens. Read on to see Becky's thoughts on why coproduction and patient leaders will change the NHS. 

Every strategy for innovation in the NHS recognizes the wealth of assets patients, carers and communities bring to securing sustainable health and wellbeing, and the future of the NHS and Social Care. From localism embodied in the early days of Foundation Trusts (local membership and accountability to local populations) to the Five Year Forward View ( promising a new relationship with patients and communities), through to multiple ‘coproduction’ initiatives within Vanguards or Long Term Conditions.`

The reasons for change are long rehearsed, and the solutions well articulated – collaboration between parts of the system, digital solutions, asset-based community development and coproduction. However the NHS is struggling to forge this new relationship with citizens, and to understand the multiple ways citizens contribute, the distinction between Voice, Choice and Coproduction.

The Patient and the Doctor

I enter a Consultant’s clinic room with my friend. His (the surgeon) premise is that he will advise and my friend will gratefully comply. Her premise if that she knows her own body, has tackled ‘the system’ for many years, and will choose what happens next. He is misunderstanding her. He doesn't realize she is assessing him to see whether she trusts him with her care. It becomes apparent. He is confused, and actually ‘messes up’ on the conversation. We laugh. She tells him she likes him, and he has ‘passed’ and she agrees with his assessment and his approach, and will come back. He is pleased ….and surprised. It's the best outcome, she has chosen him and the treatment. I ask her afterwards if she knows who he is. She has no idea as he hadn’t introduced himself. I tell her he’s the best in the field.

Some see this as supported self-management, that wasn't my experience. It was of patient-lead coproduction.

“Co-production is an idea whose time has come…people’s needs are better met when they are involved in an equal and reciprocal relationship with professionals and others, working together to get things done.” Boyle et al 2010

Clinical Professionals and Service Users

I recently visited Robin Lane Health and Welbeing Centre in Leeds. The partners in the practice have invested in a Health and Wellbeing Centre (it's the only GP surgery with a licensed bar) offering space for local volunteers to run groups and activities for people in the community, organised by its Charity – Love Pudsey. There are over 30 volunteers, and over 67 new or extended health, social and voluntary services and volunteer run programmes have now been established. The centre is a hub of sharing and caring between members of the community. The focus of the whole place is on wellbeing, and it makes a huge contribution to the community, and reduces the need for medical / clinical interventions. The results have been spectacular. They say “patients ….are the most important stakeholder in health and wellbeing. When they are partners in the community, they make a difference.” Robin Lane, Reimagining General Practice  2016 to 2020.

“Co-production means delivering public services in an equal and reciprocal relationship between professionals, people using services, their families and their neighbours. Where activities are co-produced in this way both services and neighbourhoods become far more effective agents of change” Boyle and Harris 2009

These are two examples about the potential of coproduction. In our highly connected world, with a scarcity of resource, services and citizens have to work together to get the very best health and wellbeing. Hoever these stories are the exception rather than the norm.

Ferlie (2015) describes many levels of coproduction from the examples we have here to national levels – the need for coproduction spans every level of decision-making in the NHS, and it requires two significant shifts:

  1. Professional prepared to listen, and to share power; to move out of the expert role into a partnership role
  2. Citizens who will and can be powerful in their own care and partners with others in bringing their assets into communities.

In short it requires citizens and patients who will be leaders in demanding an equal part, and partners with professionals in re-thinking and re-providing health and wellbeing services. Patients are agents of change and should be embraced as social entrepreneurs, creating the social energy to improve society Cayton (2006).

“A comprehensive model of leadership should also include patients and their carers……Health systems should take a variety of steps to ensure that patients and carers are able to act as stewards in the effort to reduce harm. This requires, first and foremost, a paradigm shift in how the health service approaches patient and carer engagement. Yu et al 2016

This is a daunting task given the power dynamics of the NHS. Patient leaders need peers and they need development in leadership – much as professionals do, but the difference is they don't need to learn how to lead in the public sector (they don't need to know how to lead in a beurocracy) they need to know how to lead in a democracy and with a community of citizens/patients/service users.

It’s hard being a patient leader, and you need peer mentors, a place to try out approaches, some skills and a learning group to debrief with. You need colleagues who are themselves patient leaders.  Expecting patients to just ‘do’ coproduction at the point at which professionals feel ready isn’t good enough, these patient leaders need support to be their very best.

Our collaboration on ‘You Design’ does just this – we provide the development and peer mentor support to patient leaders and the bridge between these leaders and the NHS and Social Care. We understand both perspectives, frustrations, ambitions and we know that working together really does make a difference – do it together and everyone benefits.

References

Boyle D, Coote A, Sherwood C, and Slay J.  2010. Right Here Right Now, Taking Coproduction into the mainstream. Discussion paper. NESTA, London. P6

Boyle D and Harries H. 2009. The Challenge of Co-Production. How equal partnerships between professionals and the public are crucial to improving public services. NESTA. London. p6

Cameron A 2016. Patients as Partners. Bridging the Gap Between Them and Us. Presentation at the Launch of the London Darzi Fellowship Programme 2016.

Cayton, H. 2006.  Patients as entrepreneurs: Who is in charge of change?, in Andersson, E., Tritter, J. and Wilson, R. (Eds), Healthy Democracy: The Future of Involvement in Health and Social Care, Involve and NHS Centre for Involvement, London pp. 19-25.

Fairlie, S. 2015. Coproduction: A personal journey, Mental Health Review Journal, 20 (4), pp. 267–278. 

Yu A, Flott K, Chainani N, Fontana G, Darzi A. 2016. Patient Safety 2030. London, UK: NIHR Imperial Patient Safety Translational Research Centre,