Experience, Possibility and Power: Reflections on Patient and Public Involvement by Martyn Webster

August 1, 2016

Patients. Service Users. Customers. Consumers. Leaders. Representatives. Partners. Co-producers. Stakeholders.

The PPI floor is littered with labels and name plates. Clear them away and replace them with just one. It’s all about people.

Well – not all.  But I’ll come to that later.

Experience

Every day people share their experiences with us, entrust them to us. It’s a sacred trust. They want us to do something with them. Let’s use them to do good, and to serve the common good. Have people’s experiences with you always and share them. Don’t accept the argument that “the plural of anecdote is not evidence”. Every person matters. Every experience matters.

It’s not only about compliments and complaints. Our experiences range across an infinite spectrum of quality and satisfaction and we can learn from all of them.

Our experiences are what write the story of our lives. And each of our stories is worth telling, because each of us is of worth.  Stories focus on people: they let people speak for themselves: they don’t tell, they show. They’re all around us. They’re what move us and inspire us. People forget facts, but they don’t forget a story. Maya Angelou once said, “People will forget what you said, people will forget what you did, but people will never forget how you made them feel.”

People, their experiences and their stories are what should be at the centre, not process. Putting people’s experiences front and centre stage is to provide the evidence that can be the challenge that drives forward change.

Ultimately consultation, participation, involvement, feedback is not about data to be gathered, but about people to be engaged.

Possibility

For many years now it has been an explicit policy goal that people should have a stronger voice in decisions about health and care. The rhetoric of co-production is everywhere, but often the reality still feels to be that of top-down and bottom-up approaches, with NHS and government (national and local) agencies being at the top and people and communities at the bottom.

Perhaps that’s a reflection of a reality that we should acknowledge and not pretend is otherwise. Namely, that large organisations like NHS bodies and local authorities are rooted in a vertical (hierarchical) model, where there is emphasis on making sense of the world primarily through the analysis of quantitative data and research, while people and communities when they organise themselves naturally do so along the lines of a horizontal (peer) model and place much more emphasis on personal experience and story.

In engaging with, involving or reaching out to people and communities, very often public agencies are (consciously or not) seeking to pull them into their world, into their processes, so as to help them achieve their own aims, objectives and service delivery. In so doing, they have the effect of detaching people from their natural roots, connections and relationships, thereby defeating the purpose of community engagement.

The two models can never fit together as one. But there is a space where they can meet, a space that has been called “the space of possibilities”. It can be a liberating space, a space where the two can work together constructively for the greater good. In that space, each can be who and what they are and also interact and evolve. In that space, active listening and deliberative approaches can flourish. In that space, we can learn that it can take only small adjustments to established forms and processes to lead to real opportunities for change outside the comfort zone of “that’s not how we do things”.

Life can be tough in that space. But progress can come from a recognition and accommodation by each of the other’s different nature, dynamics and governance, and the possibilities which exist right next to each other. Nurturing those possibilities is what will lead to working together more constructively for the common good.

Power

At the head of this piece I began to say that it’s all about people. But instead I’d rather say that it’s all about people and about power.

­­As a local Healthwatch organisation, we’re asked “Do you have any teeth?” and “What difference have you made?”. The fact is that we can fulfil our role – supporting and enabling local people to have a voice, using their experiences to build up a picture of what local services are really like – and present that in a coherent and powerful form to try to influence improvement. But there’s the rub. It’s like presenting a petition. Those who receive it are the ones who hold the power. We have no direct power to change services. They do. They can choose to act or not to act on the evidence we lay before them.

Many public bodies can point to how over the past few years their consultation activity has increased. But on Arnstein’s famous Ladder of Participation, Consultation is less than halfway up the ladder, in a section marked “tokenism”. The upper rungs of the ladder are about power.  Successively – power shared, power delegated and, ultimately, power transferred. Actually, in this particular context maybe it’s about power rebalanced.  Because, as the NHS Constitution itself puts it so succinctly, “The NHS belongs to the people”.

Local Healthwatch occupies a unique position – in the system but not of the system. Part of the formal structures of the system (a full member of Health and Wellbeing Boards) but firmly grounded in the world of communities. We need to develop a clear understanding of exactly where we sit in the system and how we engage with it. Otherwise, our energies will be consumed by trying to survive a precarious balancing act between doing our own thing in isolation, being swept along in the wake of others or finding ourselves present but at the same time excluded.

The organisations that over a period of forty years preceded Healthwatch – Community Health Councils, PPI Forums, Local Involvement Networks – were all at times seen in the role of “critical friend”.  Healthwatch, rather, is given the role of “consumer champion”. In that role, we have to be prepared to speak the truth to power – the truth of experience and the truth of possibility.

The sharing of power, let alone the transfer of power, is rarely (if ever) achieved without struggle and sacrifice. The reality of PPI challenges vested interests and established ways of doing things. It requires public bodies to do things differently and to let go. It can also require people themselves to think about their health and care in different ways. From all, it requires trust and it requires will.

There is clear evidence that people are still not as involved in decisions as they want to be. There is also clear evidence that when they are, decisions are better, outcomes are improved and resources are used more efficiently.

That’s why it’s worth the struggle.

Martyn Webster is currently the Manager at Healthwatch Dorset and has been a friend and colleague to us here at Patient and Public Involvement for many years.

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