Families are not getting the support they need to cope with the overwhelming demands of caring for someone with a terminal illness, findings from new research by the University of Edinburgh Primary Palliative Care Research Group, NHS Lothian, Voices of Carers Across Lothian and Marie Curie Cancer Care reveals.
"Understanding the barriers to identifying carers of people with advanced illness in primary care: Triangulating three data sources" published in BMC Family Practice highlights that family (and other unpaid) carers are not accessing support services or vital benefits because they and healthcare professionals do not recognise or over-look their needs.
Commenting on the findings, Professor Scott Murray, University of Edinburgh Primary Palliative Care Research Group, said: "Carers often prefer to think of themselves as a wife or a son rather than a "carer", and so fail to ask for help until they are struggling to cope. We must encourage people to seek help to look after their relatives, and GPs and nurses should be alert to asking their patients if they have any relative with a serious illness."
Around 10% of the UK population are carers with many providing end of life care, yet the challenges of managing their caring role alongside family, friends and work commitments means that they often find it difficult to manage their own needs and can lose their own sense of identity.
Professor Murray added: "Whilst caring for someone with a terminal illness is challenging, we must not forget the needs of carers who provide this support every day.
"Healthcare professionals must have a clearer role in identifying carers as well as encouraging carers to identify themselves. Crucially, the support carers need must be continually assessed to ensure they are receiving the right care, at the right time, particularly as the patient's condition deteriorates and the emotional and physical demands on the carer increase."
The researchers also found that carers of terminally ill people may see support and help suddenly withdrawn following the death of the person they are caring for leaving them isolated and vulnerable.
The study, funded by the Dimbleby Marie Curie Cancer Care Research Fund, has been published ahead of the conclusion to the Scottish Government's consultation on proposed legislation to support carers and young carers.
Dr Bill Noble, Medical Director of Marie Curie, who is also a former GP, said: "We know that carers can be reluctant to come forward and it is worrying that they are missing out on much needed support. Our report "Difficult Conversations with Dying People and their Families" revealed, there is no simple formula for carers. By listening, healthcare professionals can ensure that families receive the support that they need."
Sebastian Fischer from the Edinburgh VOCAL Carers Centre welcomed the report: "This study strengthens the case that family carers need to be identified through reliable NHS systems in primary and acute care and that carers need to be supported as equal partners in care. National and local carer strategies have long identified these needs and the government is addressing this further in proposals for new carer legislation introduced earlier this year. This study is very timely to strengthen the care for carer support plans and new entitlements for support."