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.

Introductory Note from PSWG Chair

2020 will always be remembered for the COVID-19 pandemic and its consequences on the quality of care, health systems and survivorship rates. The pandemic has a negative impact on everyone, including cancer patients’ physical and mental well-being, their access to treatment, care and quality time with their families. Patients and healthcare professionals continuously face challenges on how to cope with the current situation. Likewise, the ECL Patient Support Work Group (PSWG) has been affected by the pandemic, and unable to meet in person in the past year. Yet, our dedicated members have never stopped working towards the set goals.

The quality-of-life after cancer requires more and more attention. We are getting clearer image on how late effects influence patients’ and survivors’ personal life. Both the needs of patients and the job narratives of different healthcare professionals are constantly evolving. Patients are more empowered and seek larger participation in decision-making. In this fashion, multidisciplinary care and patient co-decisions will grow in importance in the coming years. How can the patient and the healthcare professional meet each other in their own needs and what is the best way to approach the relationship?

Members of the PSWG, consisting of cancer care specialists, are working together to satisfy the need of patients and focusing on improving their quality of care throughout Europe. The Association of European Cancer Leagues (ECL) believes that collaboration between different cancer societies can generate some answers and improve the standards of care. Since 2019, we have focused on putting the patient at a centre of the solution how to manage cancer in the workplace and overcome sexuality and intimacy-related issues, with a great success of publishing of a handbook for employers and leaflets for patients and healthcare professionals in 2020.

Nevertheless, we also need European decision-makers to help us achieve our mission. Among others, the PSWG has called for (i) investment in non-profit quality-of-life research and addressing the unmet needs through programmes such as Horizon Europe, (ii) supporting full integration of supportive care services for all through recommendations in Europe’s Beating Cancer Plan and (iii) structural investments in health systems and quality services through cohesion fund or the EU4Health Programme. Political initiatives need to put patients and survivors at the centre and contribute to narrowing of the inequalities gap throughout the continent.

In a diverse group such as the PSWG, it is necessary to take the national context and cultural differences into account., Nevertheless, health and well-being of patients knows no borders and finding common solutions and learning from the best practice is the way to move forward.

The purpose of this Action Plan is to organise our mission and goals in a strategic and achievable way. Thank you for reading and for your contribution to the work of the PSWG.

 

Alrik Meesen

Chair, ECL Patient Support Working Group