Family and carers

Family carers are vital in the care of people who are living with a life-limiting or terminal condition. Yet carers themselves face many challenges of their own.

Supporting patients' families and carers

Informal carers – family and friends caring at the end of life

Supporting those close to the patient is one of the enduring principles of the hospice ethos, dating back to the foundation of the modern hospice movement in the 1960s. Hospices now reach more than 120,000 terminally ill people, offering guidance to thousands of family members and friends who are providing vital care, practical and emotional support often for many months of illness. Informal carers are both co-deliverers of care with the professionals as well as being recipients of support. Family carers are absolutely central to the support network around a patient.

Family carers need knowledge, support and recognition

Research suggests that alongside the rewards and pride of caring for a loved one, many carers suffer considerable stress during long periods of caring for someone. Carers are twice as likely to suffer from ill-health compared to non-carers and 70% of carers will hide their suffering. Carers are often isolated, miss out on significant employment opportunities in life and can face financial hardship. Many hospices across the UK have developed their own carer support services, ranging from respite admissions and coaching courses to one-to-one counselling sessions. Contact your local hospice to discover what is on offer.

Hospice UK is working with Professor Gunn Grande – one of the most published authors in the world on the support needs of carers. She and her team have developed the Carer Support Needs Assessment Tool (CSNAT), which helps to assess the personalised needs of each carer.

We have facilitated training workshops for more than 25 hospices on how to use the CSNAT in practice. This excellent tool is now used internationally and demonstrates that assessing carers’ needs is therapeutic in itself, as well as guiding more appropriate support.

In 2018 Prof Grande and Dr Gail Ewing published findings from a project which examined the organisational structures and procedures needed to identify, assess and support carers during end of life care. Read the ten recommendations for organisational change in support of comprehensive, person-centred assessment and support for carers.

The Commission into the Future of Hospice Care in 2013 pointed to a wealth of research evidence on the role of carers and their needs.

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