by Connie Le Maitre
Always keen to promote the awareness of lymphoedema, I volunteered to write my first blog.
Lymphoedema is a swelling caused by damage to the lymphatics. It can be primary (congenital) or secondary, most often as a result of cancer treatments. The prevalence of lymphoedema has been estimated as 2:2000, but this increases to 5.4 per 1000 in the over 65’s (Ref: http://www.soffed.co.uk/slpn/wp-content/uploads/2013/05/Physiotherapy-Works-Lymphoedema.pdf).
As the lymphoedema lead for NHS Ayrshire and Arran I have been involved with lymphoedema on a national level; as a lymphoedema specialist physiotherapist I deal with lymphoedema on an individual basis. I would like to tell you a little bit more about both of these roles.
At a National level there has been a lot of work put in towards recommendations for lymphoedema care in Scotland. These recommendations were set the Scottish Medical and Scientific Advisory Committee (SMASAC) Short Life Working Group on Lymohoedema, who aimed to make recommendations which would enable the delivery of a high quality and equitable service for all lymphoedema patients in Scotland irrespective of their diagnosis or postcode. These recommendations are now being taken forward through the individual health boards. There is also a well established Network of Lymphoedema Practitioners in Scotland (SLPN) where members representing all health boards attend meetings to develop lymphoedema care further, as well as share practice with other practitioners. The group has been involved with the development of a website to centralise information on lymphoedema for doctors, nurses and AHP’s. The website is fairly new, but has had positive feedback from various health professionals.
Our local service in Ayrshire and Arran provides lymphoedema care across all 3 health and social care partnerships, for all types of chronic oedema, and has a mixed-skill team of specialists. A lot of our patients have had a cancer diagnosis due to the high incidence of lymphoedema following treatment of certain cancers, e.g. breast cancer. As treatment has become less invasive and more precise, the incidence of cancer related lymphoedema has reduced. On the other hand, more people survive cancer for longer, and many live longer with a secondary cancer. So there is still a population of lymphoedema patients with a history of cancer or with a diagnosis of secondary cancer.
As lymphoedema is a chronic condition, having a swollen body part can be a constant reminder of having had cancer. I deliberately used the word body part as most people know about arms and legs being swollen, but depending on where the cancer was, you can have oedema of the trunk, breast, genitals or head and neck. The aim of treatment for lymphoedema would be to have as little oedema as possible; the less swelling, the fewer complications.
Treatment for lymphoedema is based on self management: educating patients to look after their oedematous body part with a daily routine of skin care, exercises and wearing compression garments. More self management information can be found here. Lymphoedema should not stop a person from being active. People should be able to take up any activities/sports that they used to do or should be able to take up new activities/sports. However it is common for individuals to be concerned about exercising with lymphoedema, thinking it can make the swelling worse, but there is no evidence to support this assumption. As being active has so many other health benefits from supporting weight loss, to reducing the risk of (secondary) cancer, we would encourage people to be as active as possible. The key to resuming activities or starting new activities is in easing yourself in. It is important to gradually increase the level of activity (in intensity and duration), not the type of activity.
Having lymphoedema can have a big impact on someones quality of life and well being: from the self image changes, to difficulty with clothing and being reminded of their cancer diagnosis/experience. The severity of oedema is no indication of the psychological impact for the patient: one patient can be distressed by relativly mild swelling where as another patient can be mentally fine with severe swelling. It is unfortunate that there are still people with lymphoedema who have either no access to treatment (particularly non-cancer patients), who have had to wait for many years before a lymphoedema diagnosis was made and who are confronted with health professionals with very limited knowledge of lymphoedema and the impact it has on their lives (Ref: http://www.lymphoedema.org/) .
Our lymphoedema team will continue to raise awareness and offer support to other health professionals who will help to achieve a quality and equitable service for all lymphoedema patients in Ayrshire and Arran as set out in the recommendations published by the Scottish Government in partnership with Macmillan Cancer Support.
Connie Le Maitre
Lymphoedema Specialist Physiotherapist, NHS Ayrshire and Arran