Over the past six years we have been developing our understanding of self management, why it is important for people living with long term conditions and what it means to clinicians. Most importantly we are building our understanding of how these skills are relevant to patients who are living with the daily turmoil of chronic illness. We were fortunate enough to be included in the Health Foundation’s latest SHINE programme.
It can be difficult for patients; they have to self manage daily but only meet with clinicians intermittently during the course of their illness; at the same time caring for patients with long term conditions is disproportionately demanding on limited health care resources at a time when funds are challenging. To address this there is a strong policy driver to encourage self management and yet we may be demanding the biggest behaviour change from those least equipped to be able to make that change.
The Centre for Self Management Support at Addenbrooke’s hospital in Cambridge exists to address this issue. We have specialist skills in every area of self management and one of the major challenges we are addressing is how to truly understand what patients want and need from their health care service. In particular we aim to understand what is important to them, clearly differentiating this from what is important for them, which health care providers traditionally have focused on. What we now understand more is that patients will be motivated to change when the reasons to do so are important to them; this is the key to living well with chronic conditions that needs to be unlocked.
And so to SHINE – we have had the opportunity to test a model called Working Together for Change. This model developed by Helen Sanderson Associates is already used in mental health and social care. The process is well trodden in these areas but not, until now, in mainstream health. The process begins with person centred reviews where we really understand what is working, not working and important in the future for these patients. Then each patient’s top two patient led priorities are taken forward to a workshop. The workshops, held last month were attended by patients, carers, clinicians, commissioners, health care managers and third sector organisations and here we had the opportunity to really explore these priorities, to challenge existing provision and ultimately consider both the more traditional and some radical solutions to the problems these patients face; of which there are many.
You would not be surprised to know that many patients want to stay in their own home and be supported to do so as they get older, they want access to their GPs quickly and easily, they want to be listened to and valued, they want straight answers, they understand that sometimes things go wrong but do not always get an apology. They do not want to be a burden and understand the difficult financial position the NHS is in at the moment.
You might be more surprised to hear that many of these patients know their limits but still seek to be as independent as possible, that some are still waiting for appointments from hospitals and letters they have been promised still have not arrived but they do not feel they can keep chasing. That they are frustrated by the amount of time they actually get with the doctor and that assumptions are made about their health “If I come to see my GP out of breath because I live with COPD then before I can tell him what I am actually here for he is already looking at a new puffer or changing my medication; I actually wanted to talk to him about something else”.
Quite clearly patients understand what it is like to live with their long term conditions better than many health care professionals do, after all they live with it every day, they understand what a good and bad day feels like to them; what is important to them and the changes they have made to help themselves. At the same time, some have more insight and desire to self manage than others and it is important to bear in mind that not everyone has the ability or want to be an effective self manager.
The projects the Centre undertakes are interlinked around self management; from co-creating health, supporting housebound patients with technology, understanding how to build self management into patient education programmes, developing clinical training modules to support patients and challenge beliefs about self management, to helping commissioners understand what is important to patients.
It is all helping us to gain an improved understanding of how to support clinicians to support these patients better and how supportive self management can sit alongside excellent clinical care.
Once we understand what influences behaviour change we can then look at how services can be developed or changed to support this population better. The Working Together for Change process has taken us on the first step to this. We will see what the outcomes will be when the project ends but I have little doubt that understanding patients better and what motivates them and what is important to them is definitely a positive way forward. Then all we have to do is to keep listening!
Tracy Watts is the Lead for Patient Education at the Centre for Self Management support at Cambridge University Hospitals Foundation Trust