9 March 2015
Hundreds of thousands of people with cancer are left housebound, unable to wash or dress themselves and are even at risk of soiling themselves in their own home due to a lack of social care support, according to a new report published today by Macmillan Cancer Support.
‘Hidden at Home – the social care needs of people with cancer’ reveals that one in 10 (11%) people with cancer in the UK, equivalent to at least 160 000 people, say they are constantly or often left housebound due to a lack of support. At least 100 000 people (7%) are constantly or often unable to wash themselves, dress or go to the toilet.
Today’s research provides for the first time a full picture of the widespread social care needs of people with cancer, with around two thirds (64%) having practical or personal care needs. These can include being completely unable to get in and out of bed, move around, cook food as well as being unable to wash, get dressed or go to the toilet independently, or needing a lot of help to do so.
The charity claims there is growing public acknowledgement that many people living with long term conditions need social care and too often they are inadequately supported. These findings reinforce this consensus but show that people with cancer are not an exception.
The charity report highlights that the lack of support for people with cancer does not only leave many housebound but is also putting people’s health at risk. One in seven (15%) people with cancer have had to go to hospital for an unplanned or emergency visit because of a lack of support for their practical or personal needs.
Lisa Grice, 55, from Cheshire was diagnosed with womb cancer in 2012. She says:
“There was no support after I was discharged from hospital. I’d been through a hysterectomy and was confined to a wheelchair. I was depressed and felt very alone, unable to wash myself or use the loo properly. I felt so hopeless that I didn’t want to go for radiotherapy. My husband couldn’t cope as he had his own physical issues. A discussion before leaving hospital about my support needs could have avoided this awful and debilitating situation.”
Macmillan says there are a number of reasons why people living with cancer do not always get access to formal social care support when they need it. These could include not enough support being available from local councils or the NHS (or health and social care trusts in Northern Ireland), people not being aware of what support is available or thinking they might not be eligible to receive it.
Lynda Thomas, Interim Chief Executive of Macmillan Cancer Support says:
“There is a growing recognition that social care is often vital for people living with long term conditions. But unfortunately people with cancer have been highlighted as a group that already have all of their needs met by the NHS, because they are thought to be purely medical in nature.
“Today’s findings debunk this unfair myth. They show that people with cancer have needs which are far more widespread than we had even realised and that sadly the health and social care systems are too often failing to provide people with basic support.
“It is heartbreaking that so many people with cancer are not getting the practical support and personal care they desperately need, too often living with constant feelings of fear, anger and isolation as a result.
“Macmillan is urgently calling on the NHS and local authorities to recognise that people with cancer do have social care needs and they desperately need more support. Macmillan is keen to work with these organisations to help people reclaim their lives – and dignity - from cancer.”
Macmillan is also calling on health and social care providers to:
1. Recognise the scale and impact of unmet need of thousands of people affected by cancer.
2. Work collaboratively with the NHS, Local Authorities and Macmillan Cancer Support so that solutions meet the huge scale of demand. Macmillan is fully committed to playing its part and is keen to bring its experience, expertise and investment to find appropriate solutions.
3. Ensure solutions are tailored to individuals’ needs and integrated with other health and social care services.
The report also shows how much people with cancer, and the health and social care system, rely on care provided by family and friends. For half of those with practical or personal support needs, care from family and friends is the only help they get, and half of those who provide informal care do not receive any support themselves.
The charity is also calling on the NHS, local government and third sector to work together to identify people who are caring for people with cancer and make sure they receive appropriate support.
You can view the full report here
For further information, please contact:
Charlotte Morris, Media and PR Officer, Macmillan Cancer Support
0207 091 2467 (out of hours 07801 307068)
Notes to Editors:
Macmillan Cancer Support, Hidden at Home – the social care needs of people with cancer, 2015. Research methodology: Macmillan commissioned MRUK to conduct a comprehensive study of the issue comprising of:
• A UK-wide survey of 1,037 people living with cancer and their carers (209 people in treatment, 573 people with cancer diagnosed up to 10 years previously, and 255 current or recently bereaved carers of people at the end of life)
• 24 in-depth face-to-face interviews
• 15 week-long online diaries
The research found that:
• Almost two in three people with cancer (64%) have practical or personal support needs.
• Almost one in three people with cancer (31%) have practical or personal needs but do not get enough support or get no support at all.
• One in four people with cancer (26%) experience a negative impact on their lives as a result of a lack of support for their practical or personal care needs, equating to an estimated 380,000 people in the UK
Please note all population estimates in this release and the report are based on Maddams J, Utley M, Møller H. Projections of cancer prevalence in the United Kingdom, 2010-2040. Br J Cancer 2012; 107: 1195-1202. (Projections scenario 1). Macmillan analysis based on extrapolation of 2010 and 2020 projections that the number of people living with cancer will hit an estimated 2.5 million in 2015. To reflect that our research did not include cancer survivors diagnosed more than 10 years ago, we have excluded the proportion of people living with cancer who were diagnosed 10 + years ago (taken from Maddams J, et al. Cancer prevalence in the United Kingdom: estimates for 2008. British Journal of Cancer. 2009. 101: 541-547) from the projected 2.5 million in order to calculate population estimates. Please note that in excluding all those diagnosed 10+ years ago from our population estimates, we will also have excluded a small number of people who are at the end of life who were included in the survey population, so our estimates may be conservative.
About Macmillan Cancer Support
When you have cancer, you don’t just worry about what will happen to your body, you worry about what will happen to your life. Whether it’s concerns about who you can talk to, planning for the extra costs or what to do about work, at Macmillan we understand how a cancer diagnosis can take over everything.
That’s why we’re here. We provide support that helps people take back control of their lives. But right now, we can’t reach everyone who needs us. We need your help to make sure that people affected by cancer get the support they need to face the toughest fight of their life. No one should face cancer alone, and with your support no one will.
To get involved, call 0300 1000 200 today. And please remember, we’re here for you too. If you’d like support, information or just to chat, call us free on 0808 808 00 00 (Monday to Friday, 9am–8pm) or visit macmillan.org.uk