Sharing leadership with patients and service users: conversations at the borderline

What more is possible when leadership is shared with patients and service users? This was the question we posed at a roundtable event last month.

Our intention was to host the diversity of perspectives on this question, and see what emerged. We invited people we knew had an interest – patient leaders, organisational and clinical leaders – and also put an open invitation on our website and Twitter. We were curious about who might value a conversation about shared leadership.

Most people who responded were patient leaders, along with some organisational leads charged with working with patient leaders and service users. Arguably this reflects the real level of interest about patient leadership in health and social care – it matters most to patient leaders themselves, many of whom experience their perspectives to be peripheral in both their personal care and in strategic decision-making.

While there are a number of organisations promoting patient leadership or actively delivering support (the Centre for Patient Leadership and National Voices to name two) patient leaders don’t yet have a recognised collective voice – there is no ‘Royal College’ or official authority to gather, synthesise and promote their concerns. We still have a long way to go before patient leadership is established as a legitimate, recognised aspect of system leadership.

One challenge posed by patient leaders is the structural changes that would be required to our existing system if patient and service user leadership were to have a recognised role – this would require a system with less emphasis on supply and more emphasis on responding to the diversity of demand.

Our conversation reflected the diversity of views and questions that patient leaders bring to the table. The discussion was full of rich disagreement: lots of insight and assumptions about what is going on currently in the health and social care system and how priorities for leadership resources are determined; personal stories; challenging questions; frustration; contradictions; diversity; confusion; deeply held values; principles; outrage; courage; and also hope. Whew! Many people said it was exhausting.

On one table there was intense discussion about language and definitions: who are patient leaders? Are they an elite group addressing strategic issues or does leadership happen at every level of patient and service user experience? This is a debate to which patient leadership continually returns with lots of answers but no clear consensus. We know that when terminology and identity are so repeatedly contested we are in a territory of radical change and difference, perhaps a more practical question might be: ‘what will enable shared leadership between clinicians and managers and patients or service users?’

Some strong emotions surfaced in our discussions. One person asked, ‘why are you shouting, why are you so passionate about this?’. It was a good, probing question, one which didn’t shy away from the strength of feeling being expressed or the challenging ideas that lay behind it; instead it enabled the inquirer to hold open their curiosity and tolerance of a deeply felt perspective and create enough space for the other person to share why that really mattered to them. Could honest, probing questions be a route to a place of shared understanding, where shared leadership might be more possible?

Theodore Zeldin claims that ‘valuable conversations take place at the borderline of what we understand and what we don’t understand, with people who are different to ourselves.’ (Zeldin 1998, Conversation, pg. 88)

I think that is where we are now with our conversation about ‘what more is possible when leadership is shared?’ – edging towards the borderline between what we know and what we don’t yet know about the shift towards shared leadership across our health and social care system. Our conversation last month was just one marker in our shared journey towards that borderline.

If it’s hard to get to agreement about shared leadership, how much harder will it be to do this in practice? At The King’s Fund we are keen to work further with this question – what supports shared leadership, and to be a place where those with experience of sharing leadership – patients, service users, commissioners and providers – can step back and reflect on the experience.

We are also keen to host a development intervention in a local setting, where we can test out what shared leadership might look like when patient leaders are included. If you would like to talk to us about how this might work in your context please do get in touch.

See our slidepack for a summary of the discussions

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#42208 Debbie Sorkin
National Director of Systems Leadership
The Leadership Centre

Many thanks for this Allison - reflecting on the day, it's notable how the discussion tended to revert to patients as opposed to service users - and how this is also notable in the number of references to patients in the blog. Service users don't get much of a look-in, although in practice they're likely to account for most of the services. Some of the Systems Leadership - Local Vision pilots have actively sought to bring both patients and service users into strategic conversations about commissioning and are reporting better levels of satsifaction as a result about the increased level of understanding across systems about what constitutes quality from the point of view of the recipient/user.

#42209 Nicola Kingston

It's interesting all this debate about terminology, I certainly don't want to be a service user or a patient, but as a carer who wants to see services delivered better, I do want to be a leader!
With the move to hand primary care commissioning back to CCGs, with all the obvious conflicts of issue dangers, surely the way ahead is for us citizens to be trained up to become leaders of governance who ensure all the elements of health and Wellbeing are coordinated better at the locality level.
Oh, and yes, please can we be trained, developed and paid for that , same as Lay members.....

#42213 Varsha Dodhia
Care Navigator
Namaste Care CIC

To make a step change, one needs to experiment at the boundaries. Insight and deep thinking needs some trials and errors before one can fully dive in. Experiential research is not always possible and collecting data can also be onerous yet one knows from intuition that possibilities exist. it is people who can see merging of different fields at borderline that brings innovation. My best quote is from Steve Job's, founder of Apple, story about how his calligraphy class helped him think about different fonts for computers and the rest is history as they say.

#42214 Allison Trimble
Leadership Associate
The King's Fund

Thanks Debbie, yes the terminology of “patients and service users” and the usage of language here is not straightforward. The ongoing issue about language points to some of the bigger questions, (perhaps paradigm shift questions?) that underpin what the future of health and social care will look as an integrated system. It throws up further questions about how we understand our different roles and identities in health and social care - patient , service user, client, professional clinician, manager, provider, commissioner. None of them are neutral and all have different relationships to power. Thanks for noticing and raising how we have played this out ourselves in the blog!

#42215 Allison Trimble
Leadership Associate
The King's Fund

Thanks Nicola, you raise a really important point about identity and how this connects to leadership and citizenship. Interesting to wonder about how the role of leader cuts across all identities of patient, carer, service user, manager, clinician, trustee, commissioner, citizen. Is “leader” another identity? I think the question of how of resources, remuneration and training apply to patient and service user leaders is critical, not least in relation to how value is attributed to the different roles. It’s an issue which is gaining momentum as patient, service user and citizen leaders have an impact on how change happens. These are some of the questions we hope to explore further with our work on shared leadership.

#98619 Carol Munt

I am a Patient Leader and proud of it. I agree with what Nicola says and would not only like to see more training and funding but also to see a database of existing Patient Leaders. There are lots of us out here doing the best we can but more are needed. I get asked to do more and more, to go to meetings or to help with projects, and find that I have to say no as I am already so involved. To be able to suggest another person would be helpful, both to me and to the organiser'

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