Carers
Finding the right societal response to give people with cancer and their carers a proper quality of life
Why it matters
Carers are often partners, parents, children, children-in-law, grandchildren, siblings, friends or neighbours. It is estimated that informal carers provide an astounding 80 % of all care in Europe. The sustainability of caregiving depends on recognition of its value. When individuals choose to take on the responsibility of caregiving, governments need to recognise the value of this work to the health system and broader society. Women are disproportionally represented, with over two thirds of carers being women. The majority of carers however are not aware that they are carrying out such a role.
While it can be fulfilling to provide care, a carer role comes with certain issues that formal carers are not faced with and that lead to lost economic opportunities due to not being remunerated for their work, time spent out of work, or outright losing their job due to inflexible employers. Carers often face psychological issues due to the difficulty of maintaining a healthy work-life balance, supressing their own emotional needs in favour of the cancer patient, and anxiety about the future.
“A carer is a person who provides unpaid care to someone with a chronic illness, disability or other long-lasting health or care need, outside a professional or formal framework.”
What ECPC adds
ECPC advocates on legal recognition and social and employment protections for carers to help alleviate the undue burden placed on them. To raise awareness of the challenging situation carers face and present concrete solutions to policy-makers, ECPC collaborated with Eurocarers to launch a ‘White Paper on Cancer Carers’, presented to Members of the European Parliament in 2018. It formed the basis of ECPC advocacy in 2018 to provide minimum provisions to carers in Europe.
The momentous Work-Life Balance Directive came into law in 2019, and along with it many of ECPC’s suggested amendments. The directive provides the first legal recognition at the EU level and in all Member States of the carer role. Furthermore, the directive establishes the right for carers to a minimum of 5 working days carers’ leave and flexible working arrangements for carers upon return to work. ECPC continues to work with its members, policy-makers and stakeholders to monitor the implementation of the directive and advocate even broader protections for carers at national level, in line with the important role they play in cancer care.