Informal carers looking after ill, frail or disabled family members, partners, friends or neighbours fulfil a vital yet unpaid - and often thankless - role in our health systems, providing 80 per cent of care across Europe.
Without them, our health systems would be unable to sustain the burden of care. Informal carers juggle numerous roles and responsibilities in a wholly unregulated situation without allotted holiday time, set working hours, labour conditions, insurance, pay or otherwise.
As a result, carers are prone to higher levels of physical, emotional, social and financial stress that can cause them to neglect their own needs. In short, there is currently no such thing as ‘work-life balance’ for Europe’s carers.
As our healthcare challenges - including an ageing population, higher rates of cancer and widening inequality gaps - intensify, so does the significance of informal care in sustainable health systems. It is perplexing that there is no legal framework in place in the member states to provide recourse and support to Europe’s more than 100 million informal carers.
Cancer provides a poignant case study for the challenges Europe’s carers face and the significant contribution they make to our health system.
We must find a way to introduce new stability and wellbeing to carers’ lives, given the significant contribution they make to health systems. Of the €126bn cancer costs the EU in 2009, patients and their families carried a staggering €75bn. These numbers show that programmes or compensation on behalf of carers are in fact direct payments in support of sustainable health systems.
As only 40 per cent of cancer carers self-identify as ‘carers’, governments must go one step further by creating a legal status for informal carers and ensure they are aware of the support entitled to them under this status.
While some may argue this approach increases costs, the statistics above reveal that support for carers is not a cost, but in fact a tremendous investment in our health systems.
The EU has taken steps to address informal carers’ needs. The Europe 2020 strategy on employment and the European gender empowerment strategy (two-thirds of Europe’s carers are women) are examples of this, as is the recent European pillar of social rights and 2016 Parliament report on women domestic workers and carers in the EU. Both of these have laid the foundation for increased European action to standardise the rights of carers across the EU.
These initiatives are praiseworthy, but there is room to take further steps. For instance, the pillar of social rights introduces five days of paid leave for workers caring for seriously ill or dependent relatives. This begs the question of whether five days is sufficient to allow carers to remain in the workforce - employed carers who spend more than 10 hours caring a week are at significant risk of leaving their jobs.
While EU-level efforts are valuable, it is ultimately the member states that will manage the adoption of these initiatives into national law. To date, only 12 member states formally recognise carers.
Other member states should follow, calling on the expertise of national patient and carer groups to develop definitions and guidelines around eligibility for informal carer status. Given the low levels of self-identification, campaigns to raise awareness about support mechanisms must accompany their roll-out.
Carers often overlook their own needs when devoting themselves to the care of others. National programmes should inform carers about this risk and challenges involved and provide psychological support to mitigate it, such as stress reduction programmes, cognitive behavioural therapy and counselling.
Practical training has also proved valuable to increase carers’ confidence in their role and to help patients avoid adverse events and reduce costs for the healthcare system. Back-up medical support such as telephone hotlines and home visits are likewise important provisions. Despite these advantages, at least eight member states do not provide training.
The final element of support for informal carers is the full integration of carers in the patient’s official care team. While governments can recommend this, it is healthcare professionals who will need to view carers as partners and systematically include them in discussions and treatment choices. It is easy to recognise member states’ key role in improving carers’ situation.
Yet the situation in several EU countries is still disappointing against the context of the European Semester. I will continue to further encourage the European Commission to increase the pressure on the EU28/27 to put the right political measures in place - now.
As a co-Chair of Parliament’s interest group on carers, I will continue to advocate for the full use of health, social and employment policy to build a society in which informal carers receive due recognition, support and protection.
We must depart from the current caring framework defined by duty and need, and instead build a framework that provides carers with flexibility, security and choice so that they regain full agency over their role and situation and also ensure their quality of life. Carers deserve it.