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Family carers missing out on support

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‘More than a million cancer carers may be missing out on vital support,’ the Daily Mirror and other newspapers have reported.

The news reports are based on a survey carried out for Macmillan Cancer Support, which identified that among 386 people who provided five or more hours of care a week to someone with cancer, around half had no support of any kind.
There are more than 1 million carers of people with cancer in the UK, and more than 6 million carers of all kinds. The report detailed the impact of the apparent lack of support on carers’ mental health, relationships and finances, finding that just 5% say they have received a local authority carer’s assessment, which enables them to access practical, emotional and financial support.

What is the caring role for people supporting others who have cancer? 

The ‘More than a Million’ report published by Macmillan is based on the results of a survey carried out by Ipsos MORI. The charity said that around one in seven people had given some unpaid informal support to a person with cancer in the past 12 months and that around one in 50 could currently be described as carers of people with cancer. The survey was carried out between May and August 2011 and it asked questions to identify carers among 18,449 people interviewed face-to-face. They then polled 386 of these people who were identified as carers of people with cancer.

The survey found that, as with all carers, most carers of people with cancer were women (62%) mostly aged between 45 and 54. The carers most often supported a member of their family such as a parent (23%) or a spouse or partner (17%), but surprisingly 31% said they cared for a friend or neighbour. In this research, being a carer was defined as giving at least five hours of support a week, or giving one to four hours with it affecting their lives in some way. Despite meeting this definition, only 43% of the people surveyed actually considered themselves to be carers (51% said that they would not consider themselves carers). You can find out more who is considered a carer at Carers Direct: what is a carer? 

The type of care given is varied, and includes emotional support for someone with cancer and helping with errands such as shopping and collecting prescriptions and helping with transportation. On average, the carers surveyed gave almost 15 hours of support per week and 81% said that being a carer impacted on other aspects of their life. The impacts included effects on:

Do carers receive adequate support?

Owing to the different ways being a carer can affect outside life, the survey considered many different types of support a carer of someone with cancer may need. The survey found that most of the support that carers receive is informal, coming from their family (44%) or friends (28%). Some carers (20%) received support from their GP or another person working within the NHS. However, half of carers polled said they received no support. The survey revealed that the type of support carers wanted was training on how to give care, and someone to provide emotional support. The carers also wanted more information on the general support available to them.

It is important to note that entitlement to a carer’s assessment is based on them being considered as giving ‘regular and substantial care’ to the person they look after. The report defined carers as those caring for more than five hours a week. While there is no legal definition for what this entails, it could explain why some carers have never had an assessment.

What is a local authority carer’s assessment?

A local authority carer’s assessment allows carers of all types to discuss with social services the help they need to maintain health and a balance between caring and other life commitments. The Macmillan Cancer Support report said that out of the people they surveyed, only 11% said they had received support from social services or local authorities and only five per cent have had a carer’s assessment. If you are looking after someone, social services are obliged to consider the different issues that can affect your caring role to assess your needs. 

What other sources of help are available for carers?

The Carers Direct helpline (0808 802 0202) is a free and confidential helpline for carers (living in England) needing help or advice on their caring role or on the needs of the person they are caring for. Carers Direct can also be contacted by mail, email and live, online webchat. You can also use Carers Direct to find addresses, phone numbers and websites for carers’ services near you.
Macmillan Cancer Support recognises the needs of people living with cancer and their carers. In the survey, 72% of carers named at least one service or activity that they thought Macmillan offers to carers and over a third said they had used at least one of these services. These included contact with Macmillan nurses and gaining information and advice through the Macmillan website.

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