Survivorship and Quality of Life Network

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Why this Network?

The battle against cancer is wide-ranging and must include:

  • a strong fight against the discrimination that too many cancer patients and survivors encounter; and
  • a relentless focus on addressing the many quality of life issues associated with life after a cancer diagnosis.

Such quality-of-life issues include the need to enhance supportive and palliative care (psycho-social and drug-related) for patients, as well as the combat of lingering stigma and fear around cancer.

To these ends and more, our Network on Survivorship and Quality of Life will convene, collaborate and coordinate.

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Panel discussion at the European Cancer Summit 2020 session “Cancer survivorship: The Physical and Psycho-Social Legacies.

Survivorship and Quality of Life are admirably central to EU Health Commissioner Stella Kyriakides’s vision for Europe’s Beating Cancer Plan.  Therefore, our Survivorship and Quality of Life Network, bringing together a wide range of experts and stakeholders, from our Member Societies, Patient Advisory Committee and Community 365, as well as external partners, intends to populate this vital EU agenda by promoting opportunities for pan European improvement in the way health systems and society takes care of the survivorship and quality of life challenges faced by cancer patients, their carers, partners and families.

The Network builds on excellent projects and initiatives on Survivorship and Quality of Life already advanced by participants in the Network, and highlights important areas of established consensus for progress. Find out more in the “Related Resources” section on the right hand-side of this page.

This includes, for example, the united view of the cancer community to establish a ‘right to be forgotten’ for cancer survivors when seeking to access financial services. This has proven to be a crucial legislative tool for tackling discrimination. It is already well-established in France Belgium, Luxemburg and most recently in the Netherlands, and is recommended for codification in all European countries. See the 2018 European Cancer Summit resolution on Survivorship (Financial Discrimination) for further information.

 

Addressing All the Needs of Cancer Patients and Survivors

Our Co-Chairs, Andrew Davies and Csaba Dégi, have convened meetings of participating Member Societies, patient groups, Community 365 and other invited stakeholders, to set the agenda for 2020 and beyond. Two important workstreams have been identified for the Network’s initial focus to address for cancer patients and survivors:

  • Physical needs
  • Psycho-social needs

 

Cancer Survivorship: The Physical and Psycho-Social Legacies

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Dolors Montserrat MEP, Member of the European Parliament’s Special Committee on Cancer speaking at the European Cancer Summit 2020 session “Cancer Survivorship: The Physical and Psycho-Social Legacies”.

The Survivorship and Quality of Life Network hosted a session “Cancer Survivorship: The Physical and Psycho-Social Legacies at the European Cancer Summit on 18 & 19 November. Combining perspectives from top experts and representatives from patients organisations, the industry and the European Parliament, the session drew attention on the wide range of impacts of cancer and cancer treatment on cancer patients and survivors, and on the need to address them through adequate care and protective regulation, such as through the implementation of survivorship care plans and of the “Right to Be Forgotten”.

  • Find out more on the 2020 European Cancer Summit here.
  • Watch the session recordings and access valuable resources here.
  • Read the report of the Summit here.

 

Free From Cancer: Achieving Quality of Life for All Cancer Patients and Survivors

On the occasion of this session, the Network also published a landmark new report outlining its key recommendations: “Free From Cancer: Achieving Quality of Life for All Cancer Patients and Survivors”. Produced via intense consultation with the European Cancer Organisation’s community, especially with the participants in the Survivorship and Quality of Life Network, the report highlights 7 priorities to help more cancer patients and survivors achieve a life truly free from cancer and its often under-appreciated impacts:

  1. Take action on cancer distress
  2. Elevate management of pain and other symptoms: core parts of the cancer patient pathway
  3. Cancer patients and survivors have sex lives too. Recognise sexuality in health system approaches.
  4. Cancer comorbidities and complications: An ever-growing challenge in need of additional focus
  5. Empower cancer patients and survivors. The importance of education and information.
  6. Provide cancer patients and survivors with the right to reintegration into the workplace
  7. Ensure cancer survivors have a right for their cancer to be forgotten by financial service providers

 

Speaking at the publication launch, Dr Matti Aapro, President of the European Cancer Organisation said:

“Working with cancer patients every day is a daily reminder of their individuality. The patient centred approach we call for in Free from Cancer is crucial. It is what helps us to treat the patient rather than the disease. It is about seeing and taking account of the whole picture. It is about having open discussion about personal priorities and circumstances and serving needs beyond only the medical. But we need the right structures in place to make this kind of care daily reality in all places. The seven priorities for action in our paper provide a good compass to the EU and Governments to prepare for a future of ever-growing cancer survivorship.”

 

Strengthening Europe in the Fight Against Cancer: Cancer Survivorship and Quality of Life

A major output of the European Cancer Organisation on cancer survivorship and quality of life in 2020 was the publication of the landmark study “Strengthening Europe in the Fight Against Cancer: Going Further, Faster”. This study, commissioned by the European Parliament’s ENVI Committee, received contributions from over 60 experts, including the Co-Chairs of the Survivorship and Quality of Life Network and many of its participants. It gives a focus on the needs of cancer patients and survivors for their quality of life during and beyond their cancer journey, and includes a range of recommendations to European decision-makers and national governments on such matters as ensuring access to survivorship care plans, as well as to the core components of follow-up care, and protecting cancer survivors from any form of cancer-related discrimination through adequate regulations. Find out more about the study here.

 

The European Code of Cancer Practice: Promoting Key Rights of Cancer Patients and Survivors

A strong alignment of the Survivorship and Quality of Life Network with the European Code of Cancer Practice has also been recognised. The Code co-produced by a team of cancer patients, patient advocates and cancer professionals, and launched in October 2020, sets out a series of 10 key overarching rights, and in particular signposts what patients should expect from their health system, in order for them to achieve the best possible outcomes. Four of Code’s rights pertain more specifically to cancer survivorship and quality of life:

  • Quality of Life: Discuss with your healthcare team your priorities and preferences to achieve the best possible quality of life
  • Integrated Supportive & Palliative Care: Receive optimal supportive and palliative care, as relevant, during any part of your cancer journey
  • Survivorship & Rehabilitation: Receive and discuss with your care team a clear, managed and achievable plan for your survivorship and rehabilitation
  • Reintegration: Be fully reintegrated into society and protected from cancer-related stigma and discrimination, so that, in so far as possible, you can return to a normal life

Find out more about the Code here.

 

In the news: Calling for a Beating Cancer Plan Covering All Bases of Cancer Survivorship and Quality of Life

On Monday 11 January, the European Parliament’s Special Committee on Beating Cancer held a hearing devoted to the empowerment of patients and their caregivers. Speaking at the hearing, Dr. Matti Aapro, President of the European Cancer Organisation, highlighted the many opportunities for EU policies to better address the survivorship and quality of life needs of cancer patients.

Drawing attention of the Committee on the Survivorship and Quality of Life Network’s report “Free From Cancer: Achieving Quality of Life for All Cancer Patients and Survivors”, he called the European Parliament and the European Commission to ensure that Europe’s Beating Cancer Plan covers all bases of cancer survivorship and quality of life, from cancer distress to cancer co-morbidities, from return to work to freedom from financial discrimination, from sex lives to pain management.

  • Read Dr. Matti Aapro’s full statement on the session here.
  • Download European Cancer Organisation’s summary of the hearing here.


To find out more about this Network, or support our work, please contact us here.

 

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