15 September 2015
Macmillan Cancer Support is urging the government to fully fund care for people at the end of life
Almost half (44 per cent) of people living with terminal cancer have no support beyond friends and family for practical or personal tasks such as washing and dressing and preparing food, according to research commissioned by Macmillan Cancer Support . This is despite more than four in five (84 per cent) people with cancer at the end of life having needs serious enough to qualify for formal social care support .
The charity is concerned about the wellbeing of people affected by cancer, as well as the financial implications on the NHS of not improving social care provisions.
The in-depth research, undertaken by Bright Blue Research (formerly mruk), found that a lack of social care support could be adding to the pressure on hospital A&E departments. Seven in 10 (70 per cent) of those with terminal cancer who felt they were not getting enough support had to go to hospital as part of an unplanned or emergency visit. That amounts to over one in four (28 per cent) of all those with terminal cancer, with one in eight (13 per cent) of all those with terminal cancer saying that this happened often or all the time .
Macmillan is urging the government to honour its manifesto commitment to improve end of life care, by prioritising funding and implementing recommendations of the independent review into choice at end of life. The charity warns today that failure to fully fund the recommendations in the government’s upcoming Spending Review would be a ‘step backwards’ in improving end of life care in England.
The research, based on interviews with 255 people with cancer at the end of life or their carers also found that the vast majority of people with terminal cancer are in emotional distress. Nine in 10 (86 per cent) are burdened by feelings of depression and sadness, seven in 10 (73 per cent) feel hopeless on occasion, and almost half (45 per cent) feel guilty .
Ann Osborn, 63, from London, cared for her father, John, when he was diagnosed with terminal bowel cancer in 2010. Ann says:
“My father wanted to die at home but we had no choice but to move him into a hospice. Our other commitments meant that he was often left alone and frightened, while he was also uncomfortable with having me be a nurse to him. It just wasn’t practical.
“Caring for someone who is at the end of life is a massive undertaking that is very hard to cope with and we couldn’t manage. There needs to be better social support available to everyone at the end of life.”
Lynda Thomas, Chief Executive, Macmillan Cancer Support says:
“People with cancer should never feel alone and unsupported, especially at the end of their life, and yet this research plainly illustrates that the inadequate, inconsistent end of life care system is failing people in the most basic way.
“The emotional impact this dysfunctional approach to end of life care has on people with terminal cancer is particularly inexcusable. It is simply appalling that people with cancer at the end of life are being made to feel guilty at what is already a very difficult time. Equally, it is just not right for dying people to spend precious time in A&E because support is not there for them at home.
“End of life care is now at a crossroads; we know that too many people are not accessing badly needed social support at home, and that planning and coordination of care is not always what it should be. We can either take action to improve the last days of many, or we can continue with this unacceptable, outdated status quo. It is now vital that the government fully funds the recommendations in February’s independent review into choice at the end of life, and in the process ensure that people at the end of life have as ‘good’ a death as possible.’”
Sign Macmillan supporters Nikki and Marie’s letter to the Chancellor George Osborne asking for end of life care to be fully funded ahead of the Comprehensive Spending Review: http://bit.ly/1MOwdVg
For further information, please contact:
Patrick Pringle, Media & PR Officer, Macmillan Cancer Support
0207 840 4891 (out of hours 07801 307068)
Notes to Editors:
 Based on a weighted sample of 255 interviewswith people living with terminal cancer, people caring forsomeone at the end of life or recently bereaved carers. Part of researchcommissioned by Macmillan Cancer Support, and undertaken by Bright Blue Research(formerly mruk), as a part of research into the social care needs of peoplewith cancer in the UK. Macmillan Cancer Support, Hidden at Home – the social care needs of people with cancer, 2015.Bright Blue Research commissioned by Macmillan Cancer Support http://www.macmillan.org.uk/Documents/GetInvolved/Campaigns/Carers/hidden-at-home.pdf (accessed September2015)
 According toeligibility criteria in place at the time of the survey. The survey mapped respondents’ answers to England’s Fair Access to CareServices (FACS) criteria. Scotland, Wales and Northern Ireland use similarcriteria. Mapping of FACS criteria is based on self-reported information ratherthan a formal assessment.
Q. Thinking about last week, please tell us to what extent you were able to do each of the things below without help from anyone else? Please tell us regardless of whether this is related to your cancer/its treatment or not
I’m not limited at all
I’m slightly limited
I’m moderately limited
I’m severely limited
I’m completely unable to do this on my own
Prefer not to say
Macmillan Cancer Support, Hidden at Home – the social care needs of people with cancer, 2015.Bright Blue Research commissioned by Macmillan Cancer Support http://www.macmillan.org.uk/Documents/GetInvolved/Campaigns/Carers/hidden-at-home.pdf (accessed September2015)
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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