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 is convening, collaborating and coordinating.

Survivorship and Quality of Life are admirably central to EU Health Commissioner Stella Kyriakides’s vision for Europe’s Beating Cancer Plan and have been made a dedicated pillar of Europe’s Beating Cancer Plan launched by the European Commission in February 2021. 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, the Netherlands, and most recently in Portugal, 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 the coming years. Two important workstreams have been identified for the Network’s initial focus to address cancer patients and survivors:

  • Physical needs
  • Psycho-social needs

I Am Not a Statistic. The Human Element of the Beating Cancer Plan

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Panel discussion at European Cancer Summit 2021 session "I Am Not a Statistic. The Human Element of the Beating Cancer Plan".

The European Cancer Summit 2021 featured a special session dedicated to discussion on the Survivorship and Quality of Life Network, titled “I Am Not a Statistic. The Human Element of the Beating Cancer Plan". The session was co-chaired by Andrew Davies and Csaba Dégi and allowed for a high-level exchange on recommendations to foster further attention to elements such as psychosocial support and the use of Patient-Reported Outcomes as part of integrated patient-centred care, including leading experts and advocates in Europe and beyond from academia as well as our Member Societies, Patient Advisory Committee and Community 365

The Network also formulated and agreed a specific section of the European Cancer Summit 2021 Declaration, stressing the need for sustained policy efforts on improving cancer patients’ survivorship and quality of life: 

“An area of Europe’s Beating Cancer Plan and the EU Mission on Cancer requiring further elaboration relates to Survivorship and Quality of Life. As flagships and other initiatives are taken forward, from the new Knowledge Centre on Cancer to the EU Network of Comprehensive Cancer Centres, from the Cancer Inequalities Registry to the Pharmaceutical Strategy and the European Health Data Space, all opportunities to maximise their contribution to the improvement of survivorship and quality of life should be identified and taken.” 

The European Cancer Summit 2021 Declaration has already been endorsed by over 60 organisations from the European cancer community. If your organisation is interested in endorsing the Declaration, please contact us here

  • Find out more on the European Cancer Summit 2021 here.
  • Read the European Cancer Summit 2021 Report here.
  • Watch the session recordings and access valuable resources here.

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

On the occasion of its dedicated session at the European Cancer Summit 2020, the Network published a landmark 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, 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.”

Calling for a Beating Cancer Plan Covering All Bases of Cancer Survivorship and Quality of Life

On 11 January 2021, the European Parliament’s Special Committee on Beating Cancer (BECA) held an expert hearing devoted to the empowerment of patients and their caregivers. Speaking at the hearing, 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 Matti Aapro’s full statement on the session here.
  • Download European Cancer Organisation’s summary of the hearing here.
  • Find more information about the hearing on the European Parliament’s website here

Leveraging All Opportunities to Advance Cancer Survivors’ Quality of Life 

Building upon its consensus positioning and initial representations, in 2021 the Survivorship and Quality of Life Network has widened and accelerated its activities to promote and advocate for the key asks enclosed in its ‘Free From Cancer’ consensus advocacy document, towards advancing cancer survivors’ quality of life through available opportunities. This has included: 

  • Holding further Network conversations with health professional, patient advocacy and other representatives, welcoming new participants from the primary care field 
  • Responding to several European Commission consultations, including in respect to ageing, and health and safety at work, calling for strengthened attention and better addressing of the physical and psycho-social impacts of cancer, through actions focused notably on cancer survivors’ reintegration into the workplace and right to be forgotten 
  • Collaborating with universities and other academic institutions on prospective research projects related to cancer survivorship, palliative care or patients’ and survivors’ access to support services 

In addition, the Survivorship and Quality of Life Network is presently engaged in providing advice to the European Commission on the creation of a ‘Cancer Survivor Smart-Card’, as outlined in Europe’s Beating Cancer Plan. Further updates will be shared in due course.

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 the 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

 

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

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