Since 2007 the ECL Patient Support Working Group (PSWG) connects cancer care experts who work together on topics such as access to insurance and financial services, return to work, caregiver support, cancer rehabilitation and palliative care. PSWG members share best practices, develop guidelines and other information sources to raise awareness and improve quality of care, and seek to empower the patient voice in national and European policy-making.
A few decades ago, getting diagnosed with cancer was essentially a death sentence. Thanks to advances in research, prevention and treatment, cancer is increasingly seen as much more manageable condition of which we know more about.
Recovering from cancer and its treatment is a first step. Cancer, however, is not always a one-time occurrence. It can be closely monitored and treated, but sometimes it never completely goes away. It can become a chronic illness.
The new challenge in front of us is to acknowledge and better tackle quality of life issues after cancer. It is becoming increasingly clear that the sequelae associated with cancer therapy may have a profound psychosocial and financial impact on patients and survivors. We found out from patients themselves and through research that return to work, and relationship and sexuality-related issues can cause severe emotional distress.
The Patient Support Working Group (PSWG), consisting of cancer care specialists, is working together to make the voice of patients heard and improve the quality of care in Europe. Both patients’ needs and the narratives of healthcare professionals are evolving. Patients are becoming more and more empowered and seeking participation in decision-making along with healthcare professionals. In the coming years, multidisciplinary care and patient co-decisions will become the norm. How can patients and healthcare professionals meet each others’ needs and effectively communicate and work together?
The Association of European Cancer Leagues (ECL) believes that collaboration between different cancer societies can lead to the exchange and take up of best practices in quality of care. But we also need European decision-makers to help us achieve our mission. In the coming years, the PSWG will focus on survivorship issues, particularly in relation to the workplace and sexuality issues.
In 2019, the PSWG welcomed a number of new members – adding expertise and multi-disciplinarity to the Group. In a diverse group such as the PSWG, it is always necessary to take national contexts and cultural backgrounds into account. Nevertheless, the well-being of patients has no borders. Thus, identifying common solutions and learning from national best practices is the way forward.
Chair, ECL Patient Support Working Group