EONS Magazine Winter/Spring 2019 edition

The role of the carer in the patient's cancer journey

Matti Järvinen is a Finnish lymphoma patient and a Board Member of the European Cancer Patient Coalition and the Association of Cancer Patients in Finland.

Here he gives us a valuable insight into the perspective of the patient, the importance of the ‘priceless’ carer and the policy initiatives required at national and European level to ensure they receive proper support.

Matti Järvinen

Matti Järvinen

When you get the message that you have cancer diagnosis you are first shocked. You want to get to treatments quickly and you hope for a continuous and smooth path through the heavy situation in life. On your journey with cancer, your mind is full of feelings and changing moods: embarrassment, worries, fears, need for information and, fortunately, also hope and joy of recovering. It is easy to understand that you cannot cope with the situation alone. The cancer affects the whole family and your friends.

Patient attitudes and roles

Patient attitudes and roles

Traditionally support for people with chronic illnesses, including cancer, has been provided at care institutions by trained health professionals and by patient organisations. For cancer patients who suffer from long-lasting every day inconveniences, the only help is often provided by their family members. As cancer care has become more personalised, the role of cancer carers has become even greater and more varied.   

The value of carers is priceless. However, for many carers this help and engagement can cause long lasting changes in their own life. They are often confronted with stress, prejudices and difficulties in combining the care of their own health and wellbeing. That’s why they also should get help and support from society. Unfortunately, the situation is not ideal in Europe. In order to support cancer carers, policy-makers must look beyond traditional healthcare pathways and into employment and other policies to acknowledge that carers provide a substantial portion of care across Europe.

The patient's aspect and patient role

The patient aspect and patient's role

European level

We know that relatives provide 23 billion euros worth of unpaid care throughout the European Union. This is 80% of all the care in Europe, which represents enormous cost savings to health systems across the world. 

Last year, the European Cancer Patient Coalition launched the White Paper on Cancer Carers in the European Parliament. This White Paper was developed with patient organisations throughout Europe, as well as the Eurocarers organisation, a Member of the European Parliament, and the University of Tirana in Albania.

The European Union holds a crucial role in improving social policy across the Member States and therefore in enhancing the support for cancer carers across Europe through changes to common social and employment policies.

In 2016, the European Commission introduced the European Pillar of Social Rights to deliver new and more effective rights for citizens in the areas of:

  • Equal opportunities and access to labour market;
  • Fair working conditions;
  • Social protection and inclusion.

As part of the package of initiatives launched together with the European Pillar of Social Rights, the European Commission has developed a legislative proposal on Work-Life Balance of Parents and Carers. The European Cancer Patient Coalition is calling for the European Institutions to approve this European Directive on Work-Life Balance. This Directive should include formal recognition of carers, paid caring leave, and flexible working conditions. 

The proposed Directive must be strongly supported by Member States and the European Institutions, as it would be a breakthrough in developing and benchmarking adequate policies to support carers.

The need for systematic change

The need for systematic change

National level

National governments should interpret the provisions in the European Pillar of Social Rights to develop the most robust policy for carers by:

  • Supporting the sustainability of caregiving by providing carers with flexibility at home and at work;
  • Enhancing patient care and quality of life by ensuring carers are supported and trained;
  • Facilitating a productive and healthy workforce through flexibility at home and at work

We also recommend that national policy-makers adopt a formal status of a carer which encompasses caring for patients with severe conditions such as cancer, in order to recognise and value this group of people who are fundamental to the sustainability of health and long-term care. 

This approach also requires investment from governments in health and care services.  There is a need for qualified nurses to take up care where caregiving is not available or is inadequate. Safety nets must be established, such as nurse telephone services and home visits from trained medical professionals. The final element of support for carers is their integration in the patient’s official care team which typically comprises a specialist, a General Practitioner (family doctor), a nurse, and the patient.

In Finland, there are an estimated 350,000 people (about 6.3% of the population) who are caring for someone with a serious disease. About 45,000 people receive support, according to the Finnish Act on Support for Informal Care. This Act gives a formal recognition of carers: a care allowance at the local level and leave to care for dependent relatives. At the moment, the greatest challenge is to improve the compatibility of the carer’s working conditions to the requirements of her or his role as a carer.

Conclusion

The value of carers is priceless. They are supporting the quality of life of my fellow patients. The impact of caregiving on health systems is enormous. This makes effective policy frameworks for carers essential. The White Paper on Cancer Carers by the European Cancer Patient Coalition demonstrates the importance of caregiving in patients with cancer where the growing burden of disease makes the ability for family and friends to support patients even more important. Solutions to these challenges are outlined in recommendations on employment, social, healthcare and educational policy, which will support caregiving across Europe.

At both European and national level, there are important policy recommendations to be endorsed which will allow a better functioning and sustainable care system and a fairer, more productive, economy. The care provided by friends and relatives cannot be replaced, and nor should it be, but providing carers with choice and support will ultimately result in giving people with cancer and their carers a proper quality of life.