9 July 2010
Responding to the review into the funding of palliative care announced by Andrew Lansley, Macmillan Cancer Support released its own report today, which highlights just why such a review is needed.
In another example of the postcode lottery in England, the report shows up to 19 million people do not have access to round the clock care at the end of their life should they want it in the area they live. The result can be devastating for people and their loved ones, as it could improve the quality of patients’ lives in their final weeks and months and enable them to die at home if they wish.
Even though over half of people (57%) who have a cancer diagnosis would like to spend the last weeks and days of their life at home less than a quarter (24%) actually do.
Worryingly, the recent Freedom of Information request by Macmillan Cancer Support revealed that nearly half of PCTs in England are not providing 24/7 community nursing to all patients at the end of their life. This is despite the Department of Health’s End of Life Strategy for England in 2008 calling on PCTs and Local Authorities to make access to community nursing at any time of the day or night available to all end of life patients.
Ciaran Devane, Chief Executive at Macmillan Cancer Support, said:
'We simply cannot claim to have a world class health service when we continue to let down our most vulnerable patients just when they need the NHS most. People must have the fundamental right to die at home if they want to. It is not right that so many end up dying in hospital, against their wishes, because they do not have the support to stay in their own home.
'We welcome this review by the Government into end of life care but it must fill the gaps in service provision to make 24/7 care a reality.'
Macmillan Cancer Support’s report also shows that since the last survey of PCTs three years ago by the National Audit Office, little has changed and progress has been disappointingly slow. Where cancer patient’s wishes are not met it can lead to traumatic experiences for patients and their families.
Vivienne, 63, from Northamptonshire, whose husband died of rectal cancer in 2009, said:
'I’d got to the point where I couldn’t cope at home. Our GP had requested a district nurse for us but we didn’t even get a call, let alone a visit. When a place became available at a hospice, 20 minutes away, it was a huge relief and although Roger wasn’t one for talking about end of life, he had asked that I be with him at the end. It didn’t happen like that. He died alone in the morning before I got there. I suffered terrible guilt that his one wish, I’d not been able to keep. If there’d been support for us at home, I’d have been by his side.'
A number of PCTs cited financial constraints as a reason why 24/7 community nursing was not provided for people at the end of life. This is concerning, especially when there are strong economic benefits to the NHS supporting patients dying at home rather than at hospital. The average cost of keeping someone in hospital for their last year of life is £222 per day. In comparison the average cost of home/community care per day is £28, nearly eight times less.
Read our report on end of life provision: Always there? [PDF, 641kb]
For further information, please contact:
Julie Wills, Assistant Media and Press Officer
Call: 0207 840 4933
Notes to Editors:
***CASE STUDIES & SPOKESPEOPLE AVAILABLE UPON REQUEST***
 This figure represents the total number of people living in PCTs which the FOI request revealed do not provide 24/7 community care for all patients at the end of life. The population figures used were estimates provided by each PCT within the FOI survey.
 Macmillan Jan-Feb 2010 online survey of 1,019 people living with cancer (either currently or in the past). 849 respondents chose to answer the questions relating to end of life. Respondents were sourced from Macmillan’s database of people affected by cancer who have agreed to take part in research, as well as from a specialist online panel provider. No quotas were set and survey data is not weighted.
 , National Audit Office (2008) End of Life Care.
,  Macmillan Cancer Support (2010), Always There? The impact of the End of Life Care Strategy on 24/7 community nursing in England.
 Ibid. The National Audit Office reported in 2008 that 24/7 community nursing was available to all patients in their home in around 53% of PCTS IN 2006-07. Three years later a Macmillan Freedom of Information request indicated that 24/7 community nursing is available for all end of life patients in only 56% of responding PCTs.
The End of Life Care Strategy noted the importance of using IT to enhance coordination of care and communication to ensure that the wishes of people can be made known. Macmillan’s survey showed that there is still some way to go before integrated IT systems are standard practice. Almost half of PCTs still do not have a process in place to register peoples’ end of life wishes and less than a third collect data on whether patients were in fact able to die in their preferred place.
Background to Macmillan Cancer Support’s FOI request:
In order to determine what progress has been made since the End of Life Care Strategy for England was published; Macmillan Cancer Support submitted a Freedom of Information request in January 2010 to all PCTs in England. We would like to thank the 127 out of 152 that responded. For a breakdown of the list please call the press office.
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.