Over a million cancer carers miss out on vital support

Over a million people who look after a loved-one with cancer are potentially missing out on vital support and benefits, according to new research by Macmillan Cancer Support.

An Ipsos MORI report - which reveals for the first time ever the number and profile of the 1.1m people currently caring for someone with cancer in the UK[1] - found that almost none (just 5%) have received a local authority Carers’ Assessment which enables them to access practical, emotional and financial support with their caring role.[2]

Worryingly, half (49%) surveyed receive no support whatsoever – either formally or informally - to help them look after their family member or friend with cancer. As well as emotional support, cancer carers administer medicine; cook and clean; and provide personal care. 

This lack of support may explain why nearly half (46%) suffer with mental health problems such as stress, anxiety and depression, and one in eight (13%) say it’s causing physical health issues such as sleep and digestive problems. One in seven (15%) carers reported financial issues such as spending more on things like travel to hospital or giving up work.

One carer who has struggled with her caring role is Rebecca Guyott, 19, Essex.[3] She says:

“I’d only just turned 18 when my mum was diagnosed with bowel cancer in 2010. It was left to me and my sisters to look after her and as a carer I found it a big strain.  At work I often had to leave the office because of the emotional stress.  I’d get home and do all the cleaning, washing and cooking as mum could hardly stand, let alone do anything for herself.  After just a week of this I slept so badly because of the worry and then could barely wake up the next morning to go into work and start all over again.

“Mum’s improved now and I’m hoping to return to college, but I still feel under pressure. I didn’t even know we could have been entitled to a Carer’s Assessment or benefits, it was never mentioned.”

The More than a million report identifies a number of key barriers to carers of people with cancer accessing vital support:

• Less than half (43%) surveyed identify with the term ‘carer’ – men even less so (just 35% compared with 48% of women) – which means they are less likely to seek help.
• Carers often don’t put their own needs first or think about what help they might need.[4]
• Low awareness of the support available – from statutory services or other sources.[5]

Ciarán Devane, Chief Executive of Macmillan Cancer Support, says:

“Our research shows how unsupported cancer carers really are in the UK. Carers want to look after their family or friend with cancer – but it is often at the expense of their own mental or physical health.

“Cancer is no longer necessarily a death sentence and this means there is a growing need for people to care for their family member or friend with cancer. Often this is long-term care. But carers need support to cope with the significant demands of their role.

“The statutory sector must increase awareness and uptake of Carers’ Assessments. Both health and social care professionals need to be signposting cancer carers for assessments.”

If you’re caring for someone with cancer and need information or support, call 0808 808 00 00 or visit www.macmillan.org.uk/carers.|

For the full research report, please click on the link below:  http://www.macmillan.org.uk/Documents/Cancerinfo/Ifsomeoneelsehascancer/More_than_a_million.pdf|

For further information, please contact:

Sarah Ross, Senior Media and PR Officer
020 7840 4722 (out of hours 07801 307068)
sross@macmillan.org.uk|

Notes to Editors:

[1] Research methodology:

• People currently supporting someone with cancer were defined as carers for the purposes of this research if they provided more than five hours of care a week (‘care’ was determined by asking them if they did any of a range of activities for someone because they had cancer) or provided 1-4 hours of care a week but said it had an impact on their lives. It does not include those who provide care as their paid job or voluntary work.   Please see the full report (on the link below) for a more detailed explanation of how carers were identified as part of this research.
• Research carried out via Ipsos MORI’s face-to-face omnibus survey of the general public. Fieldwork conducted between 20 May and 25 August 2011. 18,449 members of the UK public aged 15+ were screened to identify current carers of someone with cancer. In total 386 fitted eligibility criteria and were interviewed in more depth. Results have been weighted to be representative of the UK adult population.
• From the sample of the public interviewed, 2.1% of the UK population aged 15+ were identified as currently caring for someone with cancer (using the ‘carer’ definition outlined earlier). Converted to a population estimate (using ONS 2010 Mid Year Population estimates) this equates to 1,080,000 adults aged 15+. As a sample of people were interviewed rather than the whole population, this estimate could lie within a range calculated to be 960,000 – 1,200,000.

[2] 5% of carers surveyed say they have had a local authority Carers’ Assessment. Using the estimated total population of current carers (of 1,080,000) as a basis - this equates to just over one million carers (about 1,040,000) who do not report having ever had a Carers’ Assessment. Carers are legally entitled to an assessment of their needs by their local authority if they provide a substantial amount of care to someone on a regular basis. The purpose of the assessment is to ascertain what help they need with caring, and what services and support social services can provide.

[3] Rebecca is a member of Macmillan’s own panel of cancer carers who have agreed to comment and be quoted on their experiences of looking after someone with cancer. She was not a participant in the Ipsos MORI research.

[4] Ipsos MORI conducted a series of qualitative depth interviews with carers who took part in the survey and who agreed to be contacted for further research. These interviews suggest that carers don’t think to ask for help for themselves, partly because they aren’t aware of any services that are available, but also because they feel they should deal with things themselves. In addition to this, carers often feel that the best support for them is additional support for the person with cancer, because making things easier for that person would in turn make things easier for them.

[5] 44% of carers have never heard of Carers’ Assessments. Not being aware of the support available is one of the most common reasons given by carers for not receiving support that would be helpful to them (mentioned by 27%).

About Macmillan Cancer Support:

Macmillan Cancer Support improves the lives of people affected by cancer, providing practical, medical, emotional and financial support. Working alongside people affected by cancer, Macmillan works to improve cancer care. More than one in three of us get cancer. Two million of us are living with it. If you are affected by cancer Macmillan can help.