Tuesday, 23 September 2014

Raising the Roof of the House of Care

Today, I collaborated with Alex Kamadu (@AlexKamadu) from NHS IQ on a joint presentation at BDA Live. It was a bit of an experiment, but we felt that collaborating, as a patient and professional, on the subject of managing long term conditions was appropriate. Here is a summary of our talk, which we hope illustrates how both patients and professionals are on a journey of activation together.

The House of Care model depicts two walls, with both patients and professionals needed to hold the roof up. So both patients and professionals need to go a journey of activation. Although there are many different ways of measuring these journey's, we have chosen Clinician and Patient Activation as they compliment each other theoretically for the purpose of this exploration.

Source: Kings Fund, 2013

Clinician Activation Measure and other similar tools look at how important the principles of person-centred care are to individual clinicians. Placing a high importance on these principles suggests that a clinician is more activated and committed to their role in the partnership. 
  • Your patients know when medical care or self-care is more appropriate
  • Your patients can find their own solutions to problems 
  • Your patients can make and maintain positive health behaviour changes 
  • Your patients are active partners in decisions about their care

Patient Activation Measure is one of a number of different ways of quantifying how far patients are along this journey. It is not a permanent or one-way journey, with people changing in either direction. 
Source: Kings Fund, 2014
So if we think about these journey's together, what helps patients and professionals progress at each stage? 

For me, as a patient, I started to realise that being passive wasn't sustainable. My quality of life was such that I knew something had to change. My condition wasn't going to, so I realised that I had to. But even then, doing anything felt like climbing Mount Everest, so I had to use goals to take the small steps of starting to exercise and plan and live. The confidence I got from those early small changes helped me make bigger changes, ad problem solving helped me maintain them, even despite relapses. 

For Alex, as a professional, "I started to realise that I couldn’t continue to be the one with all the answers. The equipment and support I provided to people was more than just something that ‘met their clinical need’ - It enabled them to live the fuller lives they wanted. This meant that I had to change and have more of a healthy respect for the outcomes they wanted to achieve even if it meant that at times they decided they chose not to take my advice. By having that open and transparent dialogue I found that together we were able to find solutions that met that persons holistic needs. Every clinician should make every contact count."

Throughout this, it is the same things that help us have the knowledge, confidence and skills to fulfil our respective roles in the house of care... 

So what can we do, as patients, professionals and the NHS, to secure the peers, skills, resources and system that facilitate this? Culture change starts with US!

Thanks to Alex for the opportunity to model the principles and work together! 


  1. Anya...all I can say is never stop, thank goodness you are saying these things for the rest of us. It's 10 years since I said "I'm well on spite of the nhs" I can't do it all on my own these days....I want to work in partnership with activated clinicians. Change is finally coming.... I feel it in my waters!