Lymphoedema is a progressive, disfiguring, and disabling skin disease classified as a disorder of the lymphatic circulatory system (Organic Lymphatic-Vascular Disease). Lymphatic vessels are an active and integral component of the immune response and, in lymphoedema, there is always an increased susceptibility to infection due to the compromised immune system.
Lymphoedema arises when there is a disruption of lymphatic flow (Organic Impairment), resulting in the accumulation of lymph. People affected by lymphoedema may experience difficulties in completing activities of daily living and maintaining employment. Untreated or undertreated lymphoedema is associated with an unfavorable prognosis of disease progression and severity, which are barriers to work and cause social stigmatization, discrimination, and loss of Quality of Life (QoL).
To highlight the needs of patients within the framework of public health, the Spanish Federation of Lymphoedema Associations (FEDEAL), of which AGL is a member, drew up the following document and list of points that are framed in the NATIONAL MANIFESTO.
In all the Autonomous Regions of the Spanish State there are people affected by Lymphedema and Lipedema, and based on our experience we know that they are not diagnosed or are diagnosed late, many do not receive correct information about the disease, and there are long waiting lists or problems in accessing intensive treatment including the necessary maintenance therapy, and many patients are forced to pay for their own medical care.
For the above reasons:
1. We defend public health care, with universal access, as reflected in our Constitution. Our objective is to receive quality care from the health services of which we are direct users.
2. We wish to express the need for territorial cohesion in terms of benefits and treatment through public health care, without discrimination or exclusion on the grounds of residence, concerning diagnostic methods and the use of quality treatments, including those of recent emergence.
3. We would like to propose the implementation of Lymphoedema and Lipedema Units in Hospitals, equipped with multidisciplinary teams that can provide quality health care and offer comprehensive care in all medical and psychosocial aspects within the public health system.
4. We consider it essential to know the prevalence and incidence of Primary and Secondary Lymphedema and lipedema so that the necessary resources can be allocated to the treatment of these diseases. We want to promote epidemiological studies that address the health problems of people affected by lymphoedema and lipedema.
5. Research into Lymphoedema, Lipoedema, and Phlebedema, as well as all their possible treatments, should be promoted and supported for inclusion in National Health Plans.
6. We call for a review of some current practices that are used as treatments that pose a danger or deterioration to health, such as the indiscriminate prescription of certain drugs or the misuse of pressotherapy systems, among others.
7. We understand that age should not be a reason for exclusion in the assessment and treatment of the disease, as these are chronic pathologies, that can manifest at any stage of life.
8. We call for the establishment of programs for the early detection of Lymphedema, Lipedema, and Phlebedema, so that health professionals can refer the affected person to the corresponding services: Angiology and Vascular Surgery, Internal Medicine, Dermatology, Physical Medicine and Rehabilitation Service, etc.
9. There should be more information both for health professionals and for the patient, to be able to access the appropriate treatment as soon as possible, avoiding the worsening of the disease, which leads to an irreversible state and a greater degree of disability, which can have a negative impact on access to school, work, and social integration.
10. We request that the Ministry of Health and Science remove Manual Lymphatic Drainage from its list as a possible pseudotherapy that is under study, given that the General Council of Spanish Associations of Physiotherapists recognizes this technique as indispensable for the treatment of one of the most important sequelae of mastectomies, such as lymphedema. We also request that the Public Health System finance the maintenance therapies with manual lymphatic drainage appropriate to each patient, as it is currently being paid for by the patient.
11. We consider it necessary to include orthopedic garments appropriate to the needs of each patient in the portfolio of benefits of the Health Departments.
12. We ask that the limitations caused by Lymphoedema and Lipedema be taken into account when making assessments of Work Incapacity, Disability, and Dependency.
13. We want to be a valid interlocutor body with the Health Institutions in defense of the patient, establishing relations of training, information, coordination, and cooperation with the institutions and with similar national and international associations.
WE DON'T WANT TO BE INVISIBLE TO SOCIETY!
