While there has been a half-hearted shift in recent years towards more patient education, self-care and patient empowerment, we still operate within a system that teaches patients to give themselves over to the medical system for a solution to their conditions. Intrinsic to such an approach is the permission for patients not to take their conditions into their own hands, which runs counter to the concept of patient accountability and empowerment.
Lymphoedema is a long-term condition that has been particularly associated with a lack of patient compliance (Wigg, 2017). Lymphoedema is characterised by chronic swelling, pain and heaviness in the tissues, and is caused by protein-rich fluid accumulating in the interstitial spaces as a result of a lack of lymphatic drainage (Wigg, 2017; Mendes, 2022). It is estimated that more than 300 000 people in England alone are affected by lymphoedema (Cooper-Stanton, 2019).
Traditional treatment of lymphoedema focused on what were considered the four cornerstones of lymphoedema management—lymphatic drainage, skincare, hosiery and exercise—but modern management has taken some steps towards recognising a more complex approach to lymphoedema care (Wigg and Lee, 2014). This includes many other aspects such as weight control, modern techniques such as low-level light therapy and kinesiotaping, and the psychosocial impact of lymphoedema, among other factors (Mason et al, 2008). However, the primary focus of lymphoedema care remains on the physical impact and of the swelling that results, usually in the limbs, and on compression therapy for its treatment.
A specialised form of massage may be used to manually achieve lymphatic drainage and/or swelling may be managed using multilayer compression bandages or hosiery to provide graduated even pressure without constricting the limb (Royal Marsden NHS Foundation Trust, 2023). These approaches are often combined in an approach called complex physical decongestion therapy, and exercise and movement are important in optimising these treatments to maintain circulation and lymph flow, moving fluid out of congested areas (medi UK, 2023). There are even garments available for swelling in other areas such as compression bras for breast swelling and special garments for facial swelling (Royal Marsden NHS Foundation Trust, 2023).
Compression hosiery is designed to limit the lymph formation, providing tension in order for the muscles to pump and move lymph more effectively (Royal Marsden NHS Foundation Trust, 2023). Some examples of suitable hosiery for lymphoedema are the mediven® 550, mediven mondi and mediven forte compression stockings from medi UK (medi UK, 2023). Haddenham (2023) also provides garment selection and measurement guides for appropriate lower limb and upper limb treatment pathways. It must be noted that hosiery can be difficult for patients to put on and community nurses can play a role in providing the necessary support and education regarding the best way to do this. For example, household rubber gloves may allow a firmer grip, though applicators can be purchased if patients continue to have difficulty (Royal Marsden NHS Foundation Trust, 2023). Once successfully on, compression hosiery should feel firm, supportive and comfortable.
However, this is only half the story. Little focus is placed on the psychosocial impact of lymphoedema. Limitations associated with mobility, weight gain, posture, appearance, effects on relationships, leisure activities, purchasing clothing, among other things, can impact upon patients’ confidence, body image and quality of life (Mason et al, 2008), not to mention the burden of actually managing such a long-term chronic condition. However, it is difficult to empower patients to self-manage their condition and comply with treatment recommendations without arming them with knowledge about their condition, including how it might progress if treatment is not complied with, what can be expected if they do, and how their quality of life can be improved as a result of their active involvement in their care.
In a survey of 2500 people with long-term conditions which saught to gauge what type of control and support they wanted, more than three-quarters (77%) thought that more of their care could and should be managed at home, but that a lack of both information and support was holding them back from making this happen (Institute for Public Policy Research, 2014).
Self-management is a person's ability to manage their symptoms, treatment, physical and social consequences and lifestyle changes inherent in living with a chronic condition. Self-management leads to improved patient knowledge and understanding of their condition, confidence and coping ability, health behaviours, and possible improvements in adherence to treatment recommendations, health outcomes, reduced hospital admissions and cost-effectiveness (National Voices, 2014).
People living with lymphoedema are more likely to comply with treatment recommendations and actively self-manage their condition on a day-to-day basis if they are involved in the decisions being made on their care journey, if they are provided with adequate information about their condition, and if they feel confident about how to manage it at home. Nurses in the community can play a vital role in equipping patients living with lymphoedema with the necessary information about their condition, as well as practical information and support about self-managing it in order to see improved outcomes and patient quality of life.
National Self-Care Week was 13–19 November, 2023.