Patients need support to self manage their long term conditionsBMJ 2014; 348 doi: https://doi.org/10.1136/bmj.g2973 (Published 28 April 2014) Cite this as: BMJ 2014;348:g2973
- Anya de Iongh, patient and self management coach, Dorset
The UK statistics on long term health conditions don’t make for pleasant reading. The demands placed on the system by people with these conditions are substantial: they make up 70% of hospital bed days and 50% of general practice appointments.1 These patients are under great strain, too; they are two to three times more likely to have depression than the rest of the population, and seven times more likely if they have three or more conditions.2 This isn’t sustainable for patients or the NHS.
I’m one of these statistics. My life felt far from sustainable when I had several neurological conditions diagnosed at the age of 21. I didn’t dare to hope or make plans. A few years later I still face difficulties, but through managing my health myself I’ve been able to grow those hopes and plans.
Self management offers a way for people with long term conditions to create a more sustainable way of living with a health condition, and it enables us to solve the problems that we and the NHS face. The term puts emphasis on “self,” but effective self management is very much a team effort. However, although I live with my symptoms day in, day out, I see healthcare professionals for only a few hours a year. In developing the skills to self manage, I have forged stronger links to healthcare professionals and peer led groups for their support and advice when I need it.
I need support because self management is hard work. Maintaining positive behaviours and lifestyle changes, and keeping on top of it all, is not easy. Motivation waxes and wanes, as does my ability to cope.
Some of the professionals involved in my healthcare have been great: they have given me the opportunity to explore how to reach my goals of returning to employment and sailing; constructively challenged my unhelpful beliefs (such as thinking, “There is nothing I can do to improve or maintain my health—I’ve just got to wait for the next appointment”); and normalised the emotional impact of my illness by helping me recognise depression.
I’m not expecting doctors to be clinicians, social workers, and counsellors simultaneously. But in practice, helping people to manage their conditions themselves is about more than giving advice; it’s about building on what they are doing already.
For example, how often do you ask your patients, “What are you doing at the moment to manage your health?” Is it surprising how much self management occurs already? Acknowledging what is already happening is essential for building the confidence people often need before discussing further lifestyle or behaviour changes.3
The “little” changes that we have to make each and every day for life—such as physiotherapy exercises, remembering our drugs, avoiding certain activities or foods, and using pacing and relaxation techniques—really add up and take considerable effort, and any encouragement is like gold dust. For me, maintaining motivation is essential. I find it hard enough at the best of times, even when working towards things that are really important to me—such as returning to sailing, which involved physiotherapy, emotionally accepting my situation, and considering the practical aspects of the equipment.
Understanding what is important to the patient at the time is vital, and often this means quality of life rather than clinical markers. I apologise if what is important to me—being able to socialise, drive, or wear nice shoes without orthotics—doesn’t fit with what doctors need to achieve clinically, but hopefully we can work towards both of these with a shared agenda and mutual respect and understanding.
Supporting self management is about helping patients to develop skills such as problem solving, setting goals, accepting change, finding coping strategies, managing relationships through communication, and finding quality of life in difficult circumstances. These essential life skills can be used to great effect by everyone, to manage life at both ends of the stethoscope.
It’s one thing to recognise these skills and how important they are, but it’s quite another to optimise them, to put them consistently and consciously into practice, and to make them part of our daily routine. The three enablers for this self management support are setting an agenda, setting goals, and follow-up.4 Structuring appointments around these headings can be useful for patients and professionals alike. The more we can do this, the more we can support each other—as patients or healthcare professionals—in facing the everyday challenges in our lives.
Supporting self management isn’t always easy, but its value lies in creating more sustainable lives, which will in turn lead to a more sustainable NHS.
Cite this as: BMJ 2014;348:g2973
Competing interests: I have read and understood the BMJ Group policy on declaration of interests and declare the following interests: I work as a self management coach for My Health My Way (My Health Dorset), and I do freelance work for QISMET (Quality Institute for Self Management Education and Training) as patient leader.
Provenance and peer review: Not commissioned; not externally peer reviewed.