Perspectief 2020-48

2020-48 Assistance provision to relatives of an incurable patient 45 Despite the large number of services that provide palliative care in the UK, family and friends are also actively involved in the care of terminally ill individuals. As of 2011, there were around 6 million carers in England and Wales alone. Approximately one in ten UK residents is taking care of a family member or friend who has a terminal disease. 58% of the unpaid carers are women and 42% are men 10 . Representatives of both sexes at the age of 50-64 are most actively involved in caring for the terminally ill 11 . The duration of care in most cases does not exceed one year (54 %); 29 % of caregivers have looked after their relatives for 1-3 years and 17 % - for more than 4 years 12 . Since not everyone can combine the end of life care with work, only 31% of carers have a full-time job and 18% have a part- time job 13 . Total loss of output due to involvement in informal care in Great Britain is 0.8 % of GDP 14 . However, the charitable organization Carers UK reports that family caregivers save the state £119 billion a year. This is the sum the British Government could spend on providing professional care for the terminally ill 15 . It should be noted here that over 81% of the health care system costs in the country are covered by the Government 16 . In the situation of an incurable disease, not only the patient but also his or her family carers can receive some financial support from the Government. Also, patients suffering from some incurable diseases have access to free medicines, adaptation equipment, and so on. Family caregivers can legally take time away from work to provide care for the terminally ill. More- over, pension credits and charitable grants are available to them. In some cases, the local authorities may offer respite for carers 17 . To better understand how support is provided to relatives in the context of palliative care in Great Britain, attention should be paid to the services that are accessible to incurable patients. For instance, patients with limited life expectancy may get palliative home care services, that is jointly coordinated by social services and health care services. A medical nurse or a social worker may help with bathing, dressing, feeding, or drug intake. That reduces the load put on the relatives staying side by side with the incurable patient 18 . Another form of care is specialist palliative day services (or hospice day care). A person with limited life expectancy once a week (approximately 6 hours) attends a health care institution where he/she has a chance to get a consultation of narrowly focused specialists and communicate with other incurable patients. Such services can also be provided for family carers. In these facilities, relatives of incurable patients may meet, get the necessary