Mark Doughty shares his experience of living with a long-term condition and discusses the importance of involving people in decisions about their care.
This presentation was filmed at our conference on Sustainability and transformation plans: moving towards implementation on 24 May 2017.
In my early twenties I developed rheumatoid arthritis and a number of other linked conditions to that. And as a young man that impact on my life of developing a life changing condition, I just assumed I would get married, have kids, develop a career. I then went through a process of trying to make sense of who I was, and engaged in the health and care system to support me to become to manage that condition. And that experience, good and bad, good in the sense it was often very individual pieces of care that profoundly impacted on me. Bad, unfortunately being in a system where I needed to access different parts of the system, and often those different parts of the system were very focused on what they needed to do with me, but unfortunately very rarely did they actually talk to each other. So what I’ve done over the years since then is I’ve taken my personal experiences and the training I did after that to work with patients and communities and service users and carers to support them, but also to have conversations with the system that would enable them to turn up at decision making tables and be perceived as being equal. And I’ve also tried to work with health and care professionals to support them to reflect on what they might need to do differently. It’s really amazing to sit here on this table in my role as a patient and to recognise that I have a right to be sat here. When I read that five year forward view, I was inspired and motivated by the potential there of what could be achieved, putting out there that this is about a new relationship between the healthcare system, the leaders of those systems and the communities and patients that that system is in service to.
When I was receiving care in the beginning by the system, and the focus was on the technical and the efficient, on the identifying in me the problems that needed to be resolved, the inflamed joints, the identifying of the causes of that, the offering of technical drug solutions, right? Yes at one level I was grateful for that, but on another level I struggled, because when that was being delivered, it was being delivered through the lens of the arthritic in bay four, yes? Their view of me was not Mark the 24 year old young man, struggling to make sense of his life, that’s the model, fragmented. The trouble was, what happened to me, was I became fragmented, I found it difficult to make sense. A model in terms of care that I think is the metaphor for what we’re working with system wide is what I’ve got now. I’ve got a rheumatologist who our first conversation was around 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 do this?’ I’ve never had that conversation before. For the first time in my life instead of just being fixed, I felt seen and heard.
What is that vision, what is that purpose that inspired all of you to do what you’re doing? How is it we can really maintain and develop those relationships and those partnerships at the heart of delivering the STP process, the plans? Let’s really take an opportunity to create and build relationships and think about how we can really keep connected to the purpose that absolutely means that people like me, the communities I work with, are absolutely inspired by the potential of what the five year forward view and the STPs can achieve, and in a very positive affirmative way. So I’m going to shut up now, because I’ve gone over ten minutes haven’t I? So thank you.