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Lack of social care causing devastating consequences for 100000s of cancer patients

Macmillan Cancer Support

4 min read Partner content

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, 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.