The phrases ‘self-management’ and ‘patient education’ may conjure an image of an elderly person with a long-term condition. However, this is only part of the picture, because the whole story is more complex. NHS England (NHSE) (2018) suggests that 26 million people live with a long-term condition, a figure that rose from 15 million in 2012 (Department of Health (DH), 2012); 15% of those affected are aged 11-15 years.
These are compelling figures when we consider that the prevalence of chronic oedema/lymphoedema increases with age and that it falls within the definition of long-term conditions. Moffatt and Pinnington (2012) suggested that chronic oedema/lymphoedema affects about 4 in 1000 of the general population, 12 in 1000 of those aged over 65 years, and up to 29 per 1000 of those aged over 85 years).
Extrapolating across the age profile of England produces an estimated incidence of chronic lymphoedema in 177 559 of those aged under 65 (0.38% of the age group), 97 356 of those aged over 65 (1%) and 39 647 of those aged over 85 (3.5%) (Office for National Statistics, 2019). These estimates could mean that in England alone up to 314 562 people are affected by chronic oedema/lymphoedema. The figures focus attention not only on identifying the condition, but on how those affected can be supported in managing their condition.
Patient education
Patient self-management involves the completion of tasks (or strategies) to maintain wellness, and may include developing skills and knowledge (Rochfort et al, 2018).
Patient education is the development of abilities, through a facilitated step-by-step process, to encourage self-study and learning (Rochfort et al, 2018). However, this may be affected by the limited time that those with a long-term condition spend with a health professional. Statistics suggest that, on average, they have about 3 hours per year with a health professional, so they are effectively managing their care on their own (McDonald, 2014).
Of 2500 patients with long-term chronic conditions responding to a survey, 77% reported that management of their condition was limited due to a lack of information and support (McDonald, 2014). Although it is unclear whether the survey included patients with chronic oedema/lymphoedema, the findings offer potential insight into our patient group, especially when we consider the fact that those with a long-term condition take up 70% of total health and social care resources alongside 50% of GP appointment time (DH, 2012; NHSE, 2018).
The knowledge and expertise that patients already possess must not be underestimated. The question is how can we support this further, rather than assume patients are less than capable.
Self-management
Those affected by chronic oedema/lymphoedema and other long-term conditions require time to adapt their lives and to achieve a life balance (Pétré et al, 2017). Lake and Staiger (2010) suggested five parts to self-management:
These concepts fit into other models that focus on behaviour change: for example, the COM-B model, which stands for a person's capacity, opportunity and motivation to bring about behavioural change (National Institute for Health and Care Excellence, 2014).
It can be inferred that, if self-management and patient education is to be realised, we need not only use guidelines, but must engage with those affected. To enable an individual to take an active role in their care requires a range of skills, but also the application of a holistic lens—or the patient may judge that what is on offer is less than favourable.
To achieve this may involve providing patients with appropriate and timely information and facilitating peer support, alongside a named contact to answer questions (McDonald, 2014). In a climate of diminishing resources, this can be challenging. It may also require looking beyond the confines of our services and organisations—or we may risk continuing along a path that is well trodden and that will only lead us back to the starting point.