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.
- Read about our work: A new relationship with patients, service users and citizens
- Find out more about our leadership development programme: Leading collaboratively with patients and communities