There are over a million cancer carers in the UK but many are overlooked and are being left to cope with caring alone. With the Care Bill going through Parliament, there is a golden opportunity for this to change.
Cancer carers provide a whole range of support to loved ones with cancer: from emotional support, to practical things like helping with shopping, providing transport for trips to hospital, doing household jobs and providing personal care. New research reveals that around 240,000 cancer carers are also doing healthcare tasks including managing a catheter, controlling pain relief and giving injections.
Caring can be physically and mentally challenging. Nearly half of cancer carers suffer from mental health problems like stress, anxiety and depression, and one in eight says it causes physical health issues. Carers’ finances can also be hit hard by increased household costs, such as travel to hospital.
Few carer’s assessments
Despite this, half of cancer carers are not getting support they need to help with their caring role. Only 5% of cancer carers have had a local authority carer’s assessment and only 5% are receiving respite breaks.
This is partly because many people don’t relate to the term ‘carer’. They are more likely to define themselves by their relationship with the person they care for – as their mother, husband, daughter or friend. It is also because health and social care professionals are not routinely identifying cancer carers, and signposting them to where they can get support.
Social care professionals have a key role to play in supporting both people with a cancer diagnosis, and their carers. People with cancer often have unmet social care needs, especially during the treatment phase. Those undergoing surgery or drug therapy treatment may need support with activities of daily living such as shopping, preparing meals, and maintaining personal hygiene, as well as housework, and child and pet care. Ensuring these needs are met is one of the key ways of helping cancer carers as well, and can only be achieved by working in partnership with the health professionals involved in their care.
Cancer carers tend to have far more contact with the health service than the social care system, so GPs, oncology teams and clinical nurses specialists will be a key source of referrals to increase take up of carer’s assessments.
Profile of cancer carers
It can be helpful to bear in mind the profile of cancer carers when taking steps to identify and support these hidden carers. Carers of people with cancer span a wide range of backgrounds and ages but 22% are women aged 45-65. These carers are often in employment and have dependent children at home, on top of their caring responsibilities. There are growing numbers of male carers too. Half of all cancer carers are in employment, and the majority don’t live with the person they care for, so it may not always be immediately obvious that there is an informal carer involved in the care of the person with cancer.
Cancer carers say they lack advice and training on how to provide care, information on support available, and help with the emotional impact of caring. As well as ensuring cancer carers receive appropriate support from statutory services, these needs can also be met by social care professionals signposting cancer carers to other sources of support in their community, including charities like Macmillan.
Macmillan supports the new duty on local authorities to identify carers. We are now calling for the NHS to have a similar responsibility to ensure more cancer carers are identified and signposted to support. This cannot wait. As the number of people diagnosed with cancer doubles in the next twenty years, there will be a surge in the number of people caring for them.
For more information on Macmillan’s Do you care? campaign visit our website.
Tes Smith, Social Care Programme Manager at Macmillan Cancer Support