The Patient as Leader

Introduction Text:
As part of the Academy’s two year story, we have asked a range of people from across health and social care to share their own stories and experiences of what leadership means to them.

Patients who are living with a long term condition and who have embarked on the transformational change required to live well with their condition can bring a new perspective on supporting the system that wishes to put patients at the heart of everything they do.

At the age of 24 I developed Rheumatoid Arthritis (RA). In eight months I went from being a fit, active young man to a clinically depressed wheelchair user in constant pain.

My relationship with my condition and myself mirrored the relationship I had with the health service. A relationship where as a patient I felt viewed as a group of symptoms to be diagnosed, treated and fixed in order to be made ‘right’ again. The control and power lay with the people ‘fixing’ me. I was dependent on their expertise. I felt unseen, unimportant and certainly not listened to. I viewed my body as something that had let me down and was now alien to me. My future looked hopeless and bleak.

Around six years after developing RA, a friend of mine came to visit me. He too had a long term condition. He just sat quietly and empathetically listened to me. I did not sense any judgement or the need to give advice. For the first time, I felt truly seen and heard, and as Peter Block has said ‘Healing is being seen not solved’. He then came to visit me on a regular basis and through a process of asking powerful questions he helped me to start to transform the relationship I had with myself and my condition. My self image, confidence and self efficacy quickly improved. I developed a clear sense of purpose and a vision that was built upon a sense of hope and possibility. I clarified the values and principles that would guide the choices and decisions I would make in moving forward.

Over time I began to view things differently. I developed a mindset that was optimistic, appreciative and affirmative, focused as it was on finding solutions and not getting lost in the problems of the past. I worked on becoming more reflective and self aware and I used powerful questions (grounded in a spirit of inquiry, curiosity, open mindedness and acceptance) to challenge my self talk.

My life began to turn around, a transformational change was occurring and it was based on me consciously taking control of my life in order to achieve my vision of living well with my condition and finding fulfilment in my life.

I now recognise that I was leading my own recovery. I was no longer a patient as defined by the health system but a patient in control, leading myself and the choices I was making in pursuit of my purpose and vision – in short I had become a patient leader.

The experiences, principles and practices that guide me in leading my own life as a patient have had a powerful influence on my work with healthcare staff. I believe the insights gained from leading and managing my own transformational change can provide a way of being and operating that supports staff to relate and work differently with patients. This new way can facilitate and support the changes we need to see if patients are truly to be embedded at the centre of our healthcare service.

4 replies on “The Patient as Leader”

  • Maybe we need to remove the ‘leader’ element to ensure this much needed transformation happens to and for all patients.
    Reminds me of a friend who says she ate well, exercised daily and was very healthy. She just happened to have cancer.

    Mark Duman - a patient
    • I very much agree with you, Mr Duman.
      A Google search reveals:
      Mark (Doughty) has worked as a L&D manager in primary care, supporting staff to develop their leadership potential. He is also a member of faculty at the NHS Leadership Academy and he runs a business supporting people with disabilities and health conditions to become leaders in their organisations.

      He has been a member of the BMJ Learning Advisory Committee and an associate with The Employers Forum on Disability and a trustee with Arthritis Care.
      That’s quite a portfolio of items bringing in a modicum of income.
      Really good leaders enable their ‘followers’ to Do It For Themselves, not Do It For Them.

  • Mark thank you for sharing your story and your journey. The Patient As Leader is a powerful reminder of how transformative story telling is in our work particularly when the stories emerge from our own personal narrative. Great quote from Peter Block, ” Healing is being seen, not solved.” Also a great example of the coach with no name who without having to live up to the title of a “coach” is a brilliant coach. It’s all in the being and not necessarily the doing and you show how this supports you to make a major shift through the quality of their listening, presence and questions.

    Jackee Holder
  • This is so close to the philosophy of the Samaritan organisation. Instead of giving advice the samaritan listens and by asking question enables the caller to think through their issues and find their own solutions thus empowering them to take control of their own lives. The NHS would do well to listen more to their patients and instead of advising aim to empower patients to find the best way forward for them.

    Nicki Hayes

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