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.

See our slidepack for a summary of the discussions