When patients become leaders

In the second article in their series, Mark Doughty and David Gilbert discuss the lessons about the self that can give patients the strength to lead others.

When patients become leaders

Not all managerial and clinical leaders model true leadership qualities - but you can spot the best. They have something about them that inspires trust and helps them work with others to effect change. This is equally true of patient leaders. But the seeds of high quality patient leadership lie in a different soil.

We believe it’s the qualities that emerge when a person faces ill-health that are what will help to develop collaborative healthcare in the future. Participants in our patient leader learning programmes tend to highlight three key qualities:

  • self leadership;
  • focus on solutions;
  • valuing and working with others.

Patients learn leadership the hard way. As a 25 year old with rheumatoid arthritis, Mark Doughty had to find a way out of a depressive cycle of hopelessness and helplessness.

Self leadership

“I terrified myself with my bleak picture of the future,” he says. “Self management techniques helped, but self leadership was key. By challenging that future picture, influencing and motivating myself, I moved towards a new vision of how I wanted my life to be.”

A new set of values emerge from within the crucible of ill-health. Rachel Perkins, a clinical psychologist and mental health service user, has said: “Recovery involves redefining one’s identity in a way which includes ongoing difficulties but is not defined by them.”

Strategic leaders need a vision, yet address current realities. And they need to steer a principled path between now and the future. People with health conditions have to do likewise at a personal level. Mr Doughty says: “While having a clear future focus I learnt to live more fully in the present, becoming more mindful of my self talk, beliefs and assumptions. I asked myself what I should do if I was to act according to my principles. It was an inner compass pointing me in the right direction.”

David Festenstein is also passionate about self leadership. Part of his seven steps to recovery is about vision. Mr Festenstein had a disabling stroke that paralysed his right side and left him unable to walk: “I held the belief that it was possible for me to recover. I then kept a bright vision in my mind’s eye of being a better man, working and reunited with my family again.”

He now runs the business strokerecovery.co.uk, based on his coaching techniques for recovery. He says: “I hold the same belief that the motivational strategies I used could help so many people struck by some form of severe health setback.”

Our learning programmes use self leadership as the foundation for working with patient leaders. We believe that if you can’t lead yourself, you can’t lead others. Time and again we have seen the power released as people create a vision for themselves and identify the steps they need to take to get them there.

Patient leaders can get caught in the negativity that has cursed them while laid low with injury, disability or illness. Or they can remain angry due to feelings about professional behaviour. This is understandable. But negativity can keep people stuck in critical mode. There is another, albeit difficult, path. But again, it often emerges during ill-health.

Denise Stephens is founder and chief executive of Enabled by Design, which promotes good design to support people to live as independently as possible. She also has MS. Ms Stephens says: “Our aim is to offer constructive critique and identify good ideas. People can lose interest pretty swiftly when others are constantly negative, without wanting to change things for the better. Enabled by Design is about designing a future that we want to live in”.

This focused approach stems from her personal experiences: “The skill-set needed to adapt 24/7 to an environment that is not always accessible has stood me in good stead to be on the lookout for creative ways to tackle problems.”

Patients are natural innovators and entrepreneurs; they have to be to deal with everyday difficulties. They often see what professionals cannot. If this creative mind-set can be nurtured then engagement between patients, the public and professionals can become true co-production and stops being a paralysing analysis of what went wrong or a polarised debate about who to blame. It begins to be about co-produced solutions.

When unwell, you are hugely vulnerable. This can shape a sense of social justice - a feeling that things must change. But it can also make you more attuned to others going through difficult times and can underscore the power of friendship and professional kindness.

When David Gilbert went through a protracted period of mental health problems, he learned about the powerlessness of the psychiatric patient: “I saw professional abuse. But the best professionals listened, checked out how I was feeling and made sure I understood what was going on with my treatment. It gave me a lifelong belief in the value of real shared decision-making”.

As Ms Stephens says: “I’ve always had a strong sense of empathy, even before being diagnosed with MS. But it has given me a different and perhaps unique perspective. I’m more empathic now and hope others would be too when they go through similar experiences. This is crucial when working together to change things”.

People who use services remember staff who live their values - they can spot a fake a mile away. And they know the importance of communication. When it’s poor, or staff attitudes are, they find root in many complaints. Patient leaders can draw on these principles and move beyond an “us and them” mentality.

These qualities are at the root of our model of patient leadership, which draws on positive psychology, solution-focused coaching, mindfulness, the learning organisation and transformative and authentic models of leadership. It has similar values to professional, community, civic and lay leadership, but its origins and particular strengths seem to us, to be unique and the consequences profound.

Profound consequences

Once people have the confidence and self belief that they can lead and influence their own lives, we find them more willing to see how they can use those skills to work with others.

People need time to reflect on what they have been through and about the knowledge, skills and behaviours developed during dark times. Then, in the relative tranquillity of a learning process, they can choose behaviours to better support their vision of leadership.

When patient leaders learn to build collaborative relationships based on shared values and inspired by a shared vision, there is a move away from command and control; away from a situation where authority is derived from status, to one where it comes from understanding gained through experience. They move from dependence to independence and interdependence.

These are early days, but we sense patient leadership could be a new paradigm that enables patient-centred solutions to current health dilemmas. It will take time. But being a patient leader is also about seeing the word “patient” as an adjective, not just a noun.

Mark Doughty and David Gilbert are co-directors of the Centre for Patient Leadership.

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Readers' comments (2)
Andrew Craig | 28-Sep-2012 10:53 AM

The message from this really must be "Follow my patient leader". It’s the patients and carers and active citizens who have to be the leaders to achieve real change on the scale post-Francis and in the face of "Nicholson 2" stringency. It’s the “professionals” who should follow the well-informed “customers”, not the other way around. That’s the point, perhaps uncomfortable for many or arguments for patient leadership and for lay leadership generally. The laity has to be in control. It is simply not enough to expect the “professionals” and policy makers and institutions – however well meaning – to achieve what is needed. It is fundamentally against their interests. It can only come up from the patients. One thing is sure looking into the near future of the NHS: when the ground stops shaking beneath it, the NHS will need its patients more than ever to be powerful in order to help lead it. They don’t need permission. They have the power if they will but use it. We have to start facing up to the patient leadership challenge now and investing where leadership matters to people most – “closer to home”.

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sandra camara pestana | 12-Jun-2013 8:16 PM

very helpfull article

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