A new relationship with patients and communities?

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Part of Working with patients, service users, carers and the public

There are welcome signs that policy-makers and NHS leaders are becoming more open to exploring how health professionals could work more collaboratively with patients as leaders – and support patients to be fully involved in their own care.

The NHS five year forward view rightly calls for a new relationship with patients, citizens and communities, describing them as an 'untapped resource' for the NHS. Many patient leaders are already working creatively with health professionals to improve health and wellbeing in their communities – offering a rich source of knowledge about local needs and skills in building relationships across diverse groups.

The general direction of travel for a new kind of relationship is clear – and there is a growing excitement about the potential of this. But exactly how to make it happen is less clear.

For a start, there is a troubled history to contend with. The NHS patient and public involvement agenda has often been described as a 'them and us', sometimes combative, relationship. It is also based on a paternalistic caregiver/care-receiver dynamic that has led to ingrained patterns of behaviour. Assumptions about the different roles of patients and health care professionals are embedded in our health and social care system and are hard to shift.

A clue as to how we might begin to change this is offered by Northwest London CLAHRC (a collaborative research improvement programme that aims to accelerate health research into patient care), who describe the changing role of patients as a shift from 'users and choosers' of services to 'makers and shapers' of services (Cornwall and Gaventa, in Renado et al 2014).

Achieving a more collaborative dynamic will require a change in the way that all of us work. The ability to adapt, communicate and shift between roles will be important for all leaders who seek to establish a new, collaborative relationship that puts safety and quality at the heart of health and care in our communities.

At The King's Fund, we're keen to explore how we can support this new type of relationship. We seek to be a place where those with experience of, or the desire to learn more about, sharing leadership (such as patients, service users, commissioners and providers) can step back and reflect.

Last year we began developing our patient leadership programme of work and purposefully set out to work alongside patient leaders. Through many conversations we developed a learning relationship with two patient leaders, Alison Cameron and Mark Doughty, who we are delighted to say have now joined us as associates to help us develop this area of work. We aimed to model shared leadership and to explore what could be learned about working in this way – understanding each other's perspectives better and finding enough trust to really push each other on what our shared experience might reveal about the wider system.

We discovered that we each held a set of assumptions about ourselves and each other that didn't always hold up to scrutiny. We found a new, emergent energy and lateral ideas about how to work well together. We found that when we insisted that we come as a pair – with either Alison or Mark joining a member of our leadership team – to work with organisations on patient leadership challenges or to speak at conferences, people always seemed interested in how we were working and curious about how they might do that themselves.

We have developed a new leadership programme that has grown out of this experience.

The Leading collaboratively with patients and communities programme will provide a reflective space for pairs made up of one clinician or manager and one patient or community-based leader who will be working together on a shared leadership challenge. During the programme the pair will learn about how to lead this together. They will also benefit from learning from and sharing with other pairs on the programme. We hope it will be an exciting opportunity for participants to learn from peers across the country and to contribute to wider thinking about what a new relationship between the NHS, patients and communities might look like.

Hear from Alison Cameron and Mark Doughty, who have joined us as associates to bring their experience as patient leaders to our work


john kapp

Social enterprise Complementary Therapy Company (SECTCo)
Comment date
29 May 2015
I agree. As a patient representative, and lately as a potential provider of Mindfulness Based Cognitive therapy (MBCT) courses, I have written 90 papers for my commissioners (see section 9 of www.reginaldkapp.org, but which they cannot yet hear, but I am hopeful.

Evan Mitchell

Job Seeker,
Comment date
21 March 2015
Building a relationship means making a bond with another person; with whom we are tie up with them through emotions, feelings and other type of things. In case of health organization we have also found different types of relationship in between a doctor and patients; these relationships are really helpful in various ways it ultimately help the organization for further development. Apart from building formal relationship we need to change the attitude of relationship through better relationship development programs.

Razina Munim

Comment date
06 March 2015
More effort needs to be put into practice around creating better mechanisms for third sector engagement. The current practice of people individually engaging as patients through mechanisms such as Healthwatch is not good enough because these approaches are not easy to use for people from vulnerable and disengaged communities. Our website http://www.useyourcommunity.com is an effort to encourage people to access their local community organisations for support and advice on issues such as patient engagement. We would welcome the opportunity to understand how we can play our part in improving patient engagement.

Steve Tathata

Engagement and Facilitation Lead,
West Wakefield Health and Wellbeing
Comment date
05 March 2015
Excellent initiative. I don't think we necessarily need to contend with a troubled history but we do need to learn from it. People and organisations don't move forward by focusing on what was, they move forward by working together to define and develop what could be and by taking action to make things happen. The King's Fund's 'Staff Engagement: Six building blocks for harnessing the creativity and enthusiasm of NHS staff' is as relevant to patient, carer and community engagement as it is to staff engagement. I often say there is no 'I' in engagement except the 'I' in listen because the starting point for building relationships and co-creating change is by listening first and being heard second. Equally, good leaders don't lead by telling, they lead by listening, learning, energising and enabling. If we're going to collaborate then It's not about me and it's not about you but all about us.

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