Whether we are a patient, manager or clinician, all the conversations we have in healthcare settings should be open, honest and ‘person to person’ rather than ‘label to label’.
I was thinking about this last week at a conference where people who live with long-term conditions were encouraged to be active participants. There were lots of great speakers, but for me, the most powerful was Sanjay.
Sanjay lives with MS and moves around in a wheelchair. He found it quite a challenge to breathe, but he spoke with a directness and a simplicity that came straight from the heart. Nothing he asked the NHS to deliver was complicated or expensive- he was really just asking for common sense and kindness. Sanjay’s power came not from finely honed words, but from his willingness to share with us just how fragile he feels.
The conference came just after the publication of Transforming Participation in Health and Care, new guidance from NHS England. This well crafted guidance is about ensuring that the voice of patients is not just heard – it is acted on.
It tells us that we should be ensuring that, through shared decision making, personalised care planning and self-management support, patients (people) are supported to be active participants in managing their health and care, what the guidance calls ‘individual participation’. The guidance also talks about ‘collective participation’ – how to ensure patients actively participate in all aspects of service commissioning, design and delivery.
I think it’s good guidance, and the team who have put it together see it as a starting place. They openly acknowledge that more work needs to be done, especially around measurement. What does a coherent measurement system look like when commissioning services for people who live with long-term conditions? What is the best measure to use if you want to improve your own ability to share decisions? What is the best measurement system to use when you implement care planning? So, lots of questions – but a good start nevertheless.
The guidance drew on learning from many of the Health Foundation’s demonstration programmes, including MAGIC and Co-creating Health, plus learning from Year of Care which the Foundation part-funded. Each of these programmes demonstrated that a) systems need to fundamentally change and b) clinicians need to be trained in order for patients to feel that they are active participants in managing their health and care. The downside to the guidance is that it didn’t make the case for system change and workforce development strongly enough, nor did it make the case for a rigorous, methodical approach to implementation.
But these are minor quibbles. All in all, the guidance is engaging (especially in the innovative use of video), thoughtful and useful. Now we just need to get on and deliver. And when it comes to delivery, commissioners, patients and providers do need to work together and understand their roles.
Our publication ‘When Doctors and Patients Talk‘ demonstrated that doctors and patients are both anxious when they talk with each other. They are anxious for different reasons, but they are anxious nevertheless. Most of the time doctors don’t feel powerful, they feel scared. And in my current role as a commissioning advisor, I am often anxious and I bet the providers I work with are anxious as well. When it comes down to it, we are all human.
Of course, the most important encounters in healthcare are between patients and clinicians and its time clinical encounters became human encounters. TheTransforming Participation Guidance points us in the right direction but now its over to us to make it happen – together.
Alf is a Clinical Associate at the Health Foundation and a pain management consultant in Somerset, www.twitter.com/AlfCollins