Sharing leadership with patients and users: a roundtable discussion

This slide pack summarises a conversation hosted at The King’s Fund on 22 May 2014 about:

‘What more is possible when patients, service users and those delivering services share the leadership task in health and social care?’

This is our summary of the outputs of the event.

5 discussion themes we identified

Exploring terminology

What more is possible?

The challenges that inhibit

The conditions that facilitate

Where and how to start?

Exploring terminology (1)

› When language and terminology are contested we can be sure that we are onto something important in terms of system change.

› What do we mean by leadership?› Where does leadership happen?› Is the label ‘leadership’ helpful?› Who are the leaders?

Exploring terminology (2)

› The comments seemed to speak to some of the ideas and concepts that people may have in mind when they talk about leadership.

› Does leadership assume a hierarchical context?› Leadership brings accountability. › Leadership implies professionalism.› What does this mean for independence and integrity?

What more is possible? (1)

› A comment that voiced an underpinning belief in the room that more is possible was: Patients are not just stories, there is more.

› What patient leadership could bring:› seeing, hearing and saying the difficult things to the system

(not a comfortable role)› encouraging organisation, system and culture change (again

not easy)› improving service design, delivery and outcomes.

What more is possible? (2)

› There was recognition that the benefits of sharing leadership with patients are as yet only assumed.

› There were questions about how we identify, test and measure impact and whether this is necessary.

The challenges that inhibit (1)

› What happens when the system doesn’t want to ‘hear the difficult things’?

› We heard about resistance to working with patient leaders, both above and below the surface: › above the surface: lack of time and priority› below the surface: power, fear and tokenism.

The challenges that inhibit: practical barriers (2)

› Lack of time and priority.

The challenges that inhibit: power, fear and tokenism (3)

› The issue of power was often mentioned.

› We heard a demand for patients to have equal status and a recognition that this will require clinicians and managers to do some ‘letting go’.

› It was not assumed that this power-sharing will be easy. There will be a ‘struggle’.

The conditions that facilitate shared leadership

› There was discussion of ‘creating conditions for good stuff to happen’, which included: › skills and support› getting buy-in (frontline and executive)› making it tangible› embracing uncertainty with curiosity.

Where and how to start?

› This final theme relates to the practicalities and principles that it may be useful to think about before starting any shared leadership working.

› Where is the best place to start? Suggestions:› build on and honour the learning of others › use existing mechanisms, foundation trust memberships,

choose and book› should the focus be on the provider or commissioner?

› How do we do it: › at board level?› working with the patient/clinician dynamic?

Who to start with?

› Views were mixed.

› Do we...› pragmatically harness

the enthusiasm of the coalition of the willing?

› invest to ensure a diverse and self-renewing population of patient leaders (the ‘un-usual suspects’).

› Likely a mixture of the two?

Our reflections: assumptions and language (1)

› Underpinning this debate were assumptions about the nature of power, for example, is it fixed or emergent? Does one person have to give something up or can both parties gain? We have to question assumptions, but without getting ‘stuck’ in language quagmires.

› Some people chose to by-pass the language problem and describe the ‘how’ of leadership. For example, how leadership emerges from using conversation to create space and useful disruption.

Our reflections: self, others, context (2)

› What is required in terms of self, others and the context of health care for people labelled as patients to take up leadership?

› To what extent should patients adapt, through training, to the professional context, and to what extent should professionals and users co-develop ways of working?

› The governance and accountability of patient leadership is an area that needs further thought.

Our reflections: how we can help (3)

› Patient leadership is assumed to do ‘good’. But where is it most and least useful? Where might it disrupt things in an unhelpful way?

› How do we address the different contexts in which patient leadership can be deployed and where do we put our energy to help? Sharing will not be easy: the evidence on benefits is slim, and the barriers are both practical and deep-rooted.

› Our offer should focus on the combined value of different perspectives.

Our reflections: creative commonalities (4)

› Some of the needs of patient leaders (eg, training) and the barriers they face (eg, lack of priority) are not unique but are shared by public sector leaders. We can help to create these connections and shared spaces.

› Having clarity about payment for patient leaders seems very important because the level of reward communicates a message about value. Payment (or the lack of it) can also be seen as a mechanism that can unlock (or silence) the skills and experience of patient leaders.

Our reflections: caution (5)

› We have to exercise caution. The current drive toward patient leadership can be both productive and an unconscious defence against change. Packaging up and co-opting movements as ‘engagement’ can act as a way of silencing critical voices.

› The smart way to keep people passive and obedient is to strictly limit the spectrum of acceptable opinion, but allow very lively debate within that spectrum. Noam Chomsky

What next?

› We are keen to explore 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. If you would like to talk to us about this please email Becky Seale [email protected]

› Read more at: www.kingsfund.org.uk/patientleaders