I was flattered and delighted when Don Redding asked me to contribute to the NHS Improving Quality Integration Pioneers event, and below is a transcript from my talk that I delivered via video to the event on the 3rd December 2013. This is also available via the National Voices website.
It is a real privilege to talk to you about personalisation and what that means to me as someone who lives with several long term health conditions. The experience and journey that I have been on since my various diagnoses has felt that, over time, each little bit of my life that was important to me has been taken away. They haven't been replaced by just the standard symptoms that you would expect with neurological conditions, but by a myriad of other things... depression, anxiety, fear, and much wider implications in terms of career, social life, relationships and friends. What my life looks like now is completely different, unrecognisable from what it looked like several years ago. It felt like I had surrendered any of my defining characteristics. Anything that wasn't to do with my dodgy nervous system, I'd given up on being.
But through this journey and discovering self-management, I have been able to re-frame this and find a way of leading a healthy life.
Discovering the role I can play as a patient has really changed this journey and, I think, is going to change where I end up.
I have learnt that just addressing the straight medical and biological problems isn't going to solve everything. I need to learn how to live and have some quality of life in between my medical appointments. That requires me, as a patient and as an individual, to take control and take responsibility. That isn't something that is only required - it is actually something I want to do as well! It is much more than just a means to an end. The journey of being a patient with a long term health condition can be very dis-empowering and pretty lonely as well. So irrespective of what the clinical outcomes are at the end of the day, simple things like being in control can make that journey so much more bearable.
These changes can come about through the various interactions I have with my healthcare professionals, and through my experience of being a patient. So it is really important for me that I am able to access a service easily and effectively, and that I have a single point of contact for example. But it is also really important for me that when I do have that contact, that the dialogue between me and my healthcare professional embodies all of the principles of personalisation and self-management.
It is really important that self-management is supported because although it is called self-management, in order for it to be effective, it requires so much more than just me doing the right things. It is a partnership and a team effort, but I am the captain of that team. No matter how informed I am about my conditions or engaged I am with my care, how well I do my physio exercises and take my medications, or manage the more difficult symptoms of pain and fatigue.... if I am met in a consultation with an attitude that doesn't support, encourage or compliment that, I find self-management very difficult.
In a consultation a while ago, after finding out that I had been on a self-management course, my doctor commented "that is great, you won't be needing me any more now!" I'm still not sure if he was joking or not! Just because patients are self-managing, doesn't necessarily mean that they need the system any less. It means that those interactions with the system are more helpful for everyone involved.
Self-management isn't just a discrete interaction between the service and me - it should be evident through my whole journey and pathway through the NHS. Self-management is a mindset and a behaviour that I embody as a patient, but it is equally important that the staff embody that as well in order to support me.
From my perspective as a patient, the current NHS system looks like a really higgledy piggledy jigsaw. Most of those pieces though are very clinical and have been taken from the medical model - which important because it keeps me alive. But it is only when I have a combination of the medical, psychological and social support that helps me work towards my goals and what is important to me, that I can find some meaningful of life. Although it may seem obvious in the name, long-term health conditions, when you live with them, you are living with them for a very long time! Even though I have introduced myself today as someone living with long term health conditions, I still can't quite get my head around the time scales that we are talking about! I'm going to be living with this every single day for the rest of my life... and I'm 24.
So when we look at these issues over these time scales, the difference between just being alive and finding some really meaningful quality of life becomes so much more clear. Even over weeks and months, it can make a dramatic difference.
In order for the system to be as effective as possible for patients and providers alike, this jigsaw that is our health system needs to be using pieces from outside the medical model to really support self-management. There is one other piece of the jigsaw that is fundamentally important at whatever level we are talking about, and that is patients. We can really help to pull that jigsaw together so the pieces fit together in a more tidy fashion. But we can only do that if we are integral parts of the jigsaws, not after thoughts or add on's or pieces that have been added to the mix but long lost and forgotten.
Self-management has enabled me to turn this journey around and instead embark on a journey that is not dictated by my long term health conditions but one that I want to go on, towards my goals. Being an active self-manager is really empowering, but it can also be very dis-empowering if you come across services and systems that can't support or facilitate that self-management.
We look forward to building the jigsaw with you to make it work for everyone.