The story of us: our relationship with patients, service users and the public

Over the past couple of years, you might have read (we hope you have!) about our exploration of what a more collaborative relationship with patients, service users and citizens might look like, and how we could support it. In the process of supporting the system to evolve its relationships, we set out to experiment with and learn from our own relationships with patient leaders in the system. We couldn’t pretend to help others to do what we hadn’t tried ourselves.

In this blog, I’d like to share the story of The King’s Fund’s new and still emerging relationship with patients, service users and citizens – how it has developed so far and where it might go in the future. I hope you will forgive us this moment of introspection and invite you to share your own reflections, ideas and possibly even interest in working with us. We’d also like you to hold us to account on our progress.

As this is a story I’ll start at the beginning, although like any good story it has many twists and turns. The Fund has a history of work around patient involvement and empowerment since the 1980s. More recently, since 2012 in fact, we have had a cross-Fund group whose name changes mirror the constant ripple of indecision on how to frame and describe this area of work in the system – starting life as ‘The patient experience action group’, becoming ‘The working with patients and the public group’, and is now the ‘Involving patients and the public group’ (IPPG), which I co-chair alongside my policy colleague Helen Gilburt. At first we were simply a group of people with a common interest – working more and/or differently with patients and service users. We met to share our experiences, provide moral support and build on what we were learning. I’m not sure many in the Fund knew we existed, and we had little formal authority, a feature which is common to this type of work in the wider system.

Over the past couple of years, we have supported a range of developments including: working with patients as peer reviewers of research reports, providing user perspectives for work in communications such as our recent mental health animation, advising on use of language via our internal house style guide and reviewing our approach to involving patients in our conferences. User involvement has been a notable feature of a number of pieces of work. We facilitated a lived experience group, who provided a key point of reference to the Barker Commission, and a forthcoming piece of work examining integrated mental and physical health care has been in part co-designed with a group of service users and carers with experience of both mental and physical health conditions. Most recently, two patient leaders have joined our team of associates, and we have launched a new programme - ‘Leading collaboratively with patients, citizens and communities’. There have been frustrations, mistakes and a lot of learning along the way.

But as the successes have accrued, so has the confidence and interest, and with that the pace and ambition, including a recognition of the strategic imperative. What has contributed to achieving this more formal authority? First and foremost the efforts of many members of staff across the organisation, including a number of executive sponsors on our senior management team, to support, adapt to and learn about this new way of working. Second, the interest and encouragement of a number of our General Advisory Council members, trustees and external commentators. Third, a shared purpose, articulated in a proposal that was accepted by our senior management team of what we could and should be doing to work more collaboratively with patients, service users and citizens, inspired by the British Medical Journal’s own marker in the sand.

The Fund’s next four-year strategic plan will include a commitment to continue to evolve the way we work with patients, service users and citizens in all our work, both internal and external. Last week, Alison Cameron and I co-chaired an internal staff engagement day to consider the implications of this new commitment. As a key part of this, Ceinwen Giles, Director of Shine Cancer Support, helped us to explore, with great honesty, our own resistance to working more collaboratively. Funnily enough, the strength and humanity of the fears expressed gave me great hope.

Carl Jung once said that ‘the meeting of two personalities is like the contact of two chemical substances: if there is any reaction, both are transformed.’ Deciding to collaborate, to invite change and new relationships into The King’s Fund has already been transformative – sometimes messy and sometimes explosive – and we’re definitely not there yet. But if we’re resisting and reacting, that shows we’re engaging. And that’s a good first step.

We’ll be blogging more in the coming months about the next steps. We’d love to hear your thoughts.

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#545050 Judy Birdsell
Volunteer Co-Chair
IMAGINE: Citizens Collaborating for Health

Thank you for sharing the King's Fund experience globally. Those of us involved with emerging groups benefit greatly from your experiences, reports and resources. Thank you!

#545059 Becky

Thanks for taking the time to respond Judy. I'm pleased it's useful! We'd love to hear what you've been doing in this space and any reflections you have. If you have time please drop me a line -

#545062 Teresa Allen
AD Customer Service
NHS Blood & Transplant

I have recently been on a secondment working in Worcester with the Well connected team and had the opportunity to meet with patient representatives, this encouraged me to see what patients were saying in my own area via Healthwatch in Oxford. It has been really interesting to hear similar issues being raised over and over again so patient involvement in shaping services is really important. I really enjoyed your update, its fantastic to have passionate patients and users influencing and driving change as I am sure that tacking some of the more common issues will benefit everyone.

#545063 Sarah Yiannoullou
Managing Director
National Survivor User Network

You may be interested in the involvement standards developed by people who use services (bringing together decades of experience). The 4Pi National Involvement Standards
Many organisations and bodies are signing up - hopefully leading to improvement in quality and efficiency of services and systems.

#545064 Sarah Yiannoullou
Managing Director
National Survivor User Network

Apologies, problem with the previous link for $Pi National Involvement Standards

#545066 Cristin Lind
Facilitator, Patient-Professional Partnership
QRC Stockholm

Thanks for sharing this. It's really helpful to hear narratives about how other organizations are evolving their thinking and strategies.

#545073 Geraldine Child
Direct Voice Manager
Agewell CIC

Agewell is a user led organisation of older people in Sandwell and would be interested in getting involved in future work.

#545074 Sara Osborne
Head of Patient Involvement and Communications
Cancer Research UK

Really interested to read of your experiences, thank you for sharing them! At CRUK we have also now started to formalise our patient involvement and engagement with a number of initiatives. We're supporting staff who want to involve people affected by cancer in their work, identifying projects across our science and research funding and policy and information work to involve and increasing our engagement with people affected by cancer through the development of a network of people who want to get more involved. Always happy to share our experiences and to learn from others!

#545080 Brian Gumbley
Director and s/user of Mental health services

Can i remind Becky as to any Mental health research about the way forward for MH services --is very much still available from the Barker commission group of s/users
Otherwise your report is becoming a noteable way of working with people at the coal face

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