One of the biggest frustrations for most lymphedema patients, and health care professionals, is the lack of continuity of care available.

If you are officially diagnosed with lymphedema, which can be a difficult task on its own, you are given two choices.  First is the government health care system (at least in my province of Alberta) or the second would be the private run clinics.

The pathway to be diagnosed can be very confusing, frustrating and time consuming.  Between doctors who don’t really understand the symptoms, referrals to specialists with long wait lists, or government clinics with even longer wait times, it would be enough to plainly just give up.  I honestly think I would.  Once you are actually into one of these places (specialist or government run clinics), those healthcare practitioners do all within their scope and access to support, educate and provide treatment, with limited resources and tight time frames. Although this pathway can be more cost effective on a personal level, the time and energy that it takes to get there is priceless.

From a private clinic and therapist point of view, we are additionally put into a hard place.  We are not generally supported by most healthcare providers (not all… but a lot), we are seen as expensive and not a part of the health field. Granted, we are not nurses or doctors, but we do spend a lot of time with extensive, costly additional training, and we see lots of lymphedema patients, while they are waiting to be seen by government health services.  We unfortunately get labelled as “alternative health”, expensive massages and unsupported by medical professionals.

Why can’t we find a balance to bridge the gap? Why can’t the government see the value in connecting these two options to give the ultimate care and services to those afflicted with this chronic, incurable disease?

If we were able to work together, there could be support with private therapy while waiting to get into the government run clinics, high quality and advanced assessment provided in the healthcare clinics, using high technology devices (which would be impossible to have at a private clinic), and then once discharged from the healthcare clinics, they are returned to a private clinic for long term care. Of course, a regularly scheduled and routine re-evaluation by the government run clinics would be a great way to keep eyes on everything, but let’s work together.

Additionally, why can’t the government see Lymphedema for what it is… a chronic condition that, may or may not have been created by another medical procedure, but is no a lifelong condition that requires constant care, garments and maybe even medical devices… They are not just receiving massage… they are receiving Complete Decongestive Therapy by highly trained practitioners.. not “just” a Massage Therapist.  (don’t really get me started on that topic.. maybe next time).

Food for thought…