Specialist palliative care leading to more people being able to die at home

Specialist palliative care services in the community are continuing to lead to more people being able to die at home, according to a new report out today from the National Council for Palliative Care and Public Health England.

Latest figures from the new report, National Survey of Patient Activity Data for Specialist Palliative Care Services, Minimum Data Set for 2012-2013 (MDS), show that nearly half the people receiving specialist palliative care in the community (46.2%) died in their own home – the place where most people say they want to die. This compares with just over one in five (21.8%) nationally.

The MDS report also finds that nearly half (45%) of the people referred to a specialist palliative care in-patient service are discharged. Of these the majority (85%) were discharged to their home, dispelling the myth that people only go into a hospice to die.

Continued progress has also been made in opening up specialist palliative care services to non-cancer patients, although there remains a long way to go. The most striking increase is in Hospital Support, where diagnoses other than cancer now account for over a quarter (27%) of new patients. In Outpatient and Day Care services people with diagnoses other than cancer also now account for over one in five of all diagnoses. For specialist palliative care inpatient units the proportion of new patients with a diagnosis other than cancer has increased from 3%in 1997-98 to 12%. Despite these increases the rates are still low as cancer accounts for around 29% of all deaths.

Although almost two-thirds (66%) of specialist palliative care providers responded to the MDS survey, response rates varied widely across the country, ranging from 89% in Cheshire and the Mersey to just 33% in Northern England. Once again it also proved difficult to capture comprehensive data of the ethnicity of people being seen by specialist palliative care services.

Speaking today Simon Chapman, Director of Public and Parliamentary Engagement for the National Council for Palliative Care said:

“It’s encouraging that specialist palliative care services in the community are enabling more people to die at home, which is where most of us say we would want to be. However, despite progress many people are still not able to access the services and support they need, when they need them. We only get one chance to get it right for people who are dying, why is why reducing variations in end of life care must be a priority for policymakers, commissioners and providers. It’s also why we are committed to making the case for greater investment in understanding people’s experience of end of life care, and why we will be working with our partners to review the MDS to ensure it is fit for the future.”

Dr Bee Wee, National Clinical Director for End of Life Care commented:

“There are some pleasing trends in this report, in particular around increased numbers of people with conditions other than cancer being cared for across all specialist palliative care services. However, there are some issues highlighted, for example around variable response rates to data across the country, which need to be redressed as a priority.

High quality comprehensive data is essential if we are to improve services, position them appropriately and secure appropriate funding. That’s why this important report will be of value to a wide range of stakeholders in palliative and end of life care, and why I fully support the plans that the National Council for Palliative Care, Public Health England and Help the Hospices have to work with partners to review the MDS.”

Further information

1. National Survey of Patient Activity Data for Specialist Palliative Care Services, Minimum Data Set for 2012-2013 (MDS) is published by the National Council for Palliative Care and the National End of Life Care Intelligence Network. It is available free of charge to NCPC subscribers. Visit www.ncpc.org.uk for more information.
2. The National Council for Palliative Care is the umbrella charity for all those involved in palliative, end of life and hospice care in England, Wales and Northern Ireland. It also leads the Dying Matters Coalition (www.dyingmatters.org) which aims to help transform public attitudes towards dying, death and bereavement in England and Wales.
3. The National End of Life Care Intelligence Network (NEoLCIN) is part of Public Health England. It helps the NHS and its partners commission and deliver high quality end of life care in a way that makes the most efficient use of resources and responds to the wishes of dying people and their families. The NEoLCIN plays a vital role in supporting the implementation of the National End of Life Care Strategy. For more information, see www.endoflifecare-intelligence.org.uk
4. Public Health England (PHE) is an executive agency of the Department of Health. PHE works with national and local government, industry and the NHS to protect and improve the nation's health and support healthier choices and will be addressing inequalities by focusing on removing barriers to good health. To find out more visit www.gov.uk/phe or follow on Twitter @PHE_uk.
5. For all media enquiries please contact Joe Levenson, Director of Communications at the National Council for Palliative Care on 020 7697 1520 or 07795 158003.