Mark Doughty, The King’s Fund
Mark Doughty is co-founder and director of The Centre for Patient Leadership. He has designed a number of award-winning patient leader programmes and advised organisations, including NHS England, on patient leadership. Mark, who is also a Senior Consultant with The King’s Fund shared his experience of living with a long-term condition, with an audience of health and care professionals, at a conference last year. Here’s a summary of what he said.
"In my early twenties I developed rheumatoid arthritis as well as a number of other conditions. As a young man the impact on my life of developing a life changing condition was huge. I just assumed I would get married, have kids, and develop a career. With the onset of arthritis I went through a process of trying to make sense of who I was, and I engaged with the health and care system to support me to manage that condition.
This experience was good and bad, good in the sense that it was often the individual and small pieces of care that profoundly impacted on me. For instance I remember the nurse in outpatients who recognising I was upset came over to me and gently put a hand on my arm and asked if I needed anything. Whilst an example of a bad experience included being in a system where because of the complex nature of my health conditions I needed to be able to gain access to the different parts of the system. I needed to speak with different departments who were treating my condition. These different parts of the system were very focused on what they needed to do with me. They engaged very effectively in a diagnostic process to identify what they needed to do in order to 'fix' the problem from their perspective. Unfortunately they very rarely talked to each other and there have been times where this lack of joined up care and shared decision making had a detrimental impact on me as a person, as well as my health.
I was left with the distinct impression that I was a collection of symptoms, problems and health issues that needed resolving, managing and fixing, rather than Mark, a scared young man who initially needed to be seen and heard.
So what I’ve done over the years since then is taken my personal experiences and the training I have done, to support my personal development and I have worked to support patients, service users, carers and other members of the community with an interest in health and care. My support has included enabling and facilitating others to get their needs met as they engage across the health and care system. I am particularly keen in supporting others to have conversations that enable them to turn up at the various decision-making tables in the system and be perceived as someone with a valid voice to be listened to and heard. I’ve also tried to work with health and care professionals to support them to reflect on what they might need to do differently, how they can 'show up' in a way that supports healthy working and healing relationships not only with their peers and colleagues but also with patients, service users and carers.
When I was receiving care in the early days of living with arthritis, I felt the focus was on fixing me in the most efficient way possible, identifying the problems that needed to be resolved, in particular the inflamed joints. Then diagnosing and identifying the causes of those inflamed joints and finally offering me a drug based solution. And yes at one level I was grateful for this, but on another level I struggled, because when that was being delivered, it felt like it was being delivered through the lens of the medics worldview and that included labelling me as the 'arthritic in bay four'. Power resided in the hands of the medical professionals and they were the experts making the decisions. Things have moved on now, and I feel I have a very different relationship now with my health care professionals particularly my rheumatologist. This is summed up and reflected by what happened when we first met. That first encounter went something like this "Mark I gather you’ve told the nurse that your aim is to live a well and fulfilling life with your arthritis? Okay, so what do we need to do together to help you to do this?" Up until that point (25 years of being within the system) I had never had a conversation like this before. For the first time I finally felt truly seen and heard and not only that, but felt I had entered into a relationship based on mutual respect. This relationship has subsequently developed into what I believe is a true partnership where we both respect the role of the other as well as clearly understanding our own responsibilities.
I think my experience with the rheumatologist points towards the importance of quality relationships throughout the health and care system. I think collaborative and partnership working, although not easy to achieve, is so important if we are truly to deliver quality and safe care now and in the future."
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