See also the Public Health England website.

Information about plans for a new palliative care data collection in England

26 August 2015

Public Health England’s National End of Life Care Intelligence Network (NEoLCIN) has added information to its website about plans for a new data collection from specialist palliative care services in England. Specialist palliative care services are based in hospitals, hospices and in the community and typically consist of a team led by a consultant clinician specialising in palliative care.

The dataset includes information about patient outcomes, including patient and carer views on care. It will therefore help drive improvements in individual care and address inequalities. The data will also be used to support commissioning of specialist palliative care services in England.

If you would like to comment on the plans or give feedback, please contact neolcin at phe dot link .

Opportunity for hospices to be involved in a national project to improve data

26 August 2015

Public Health England wishes to recruit one or more hospices to take part in the Palliative Care Clinical Data Set pilot. This is to test the collection of a proposed new data set incorporating demographic, activity and outcomes-related information, with a view to improving outcomes and supporting a new model for commissioning of palliative care services in England.

They are seeking hospices which do not currently have an electronic record system. The purpose is to test a web-based data-set collection system, and to evaluate it for wider use for the planned full national collection. Participation will entail use of the web-based system to record current activity over a period of about 3 months, participation in ongoing project meetings and contributing to the pilot evaluation at the end of the financial year. For more information about the data set visit the website.

For more information or an informal discussion about participation, interested providers should contact Malcolm.roxburgh at phe dot link

Notification of withdrawal of the ELCQuA tool 31 March 2016

26 August 2016

NEoLCIN has written to all registered users of ELCQuA (End of Life Care Quality Assessment tool) recently to advise of the withdrawal of the tool in March 2016.

The Network developed and launched ELCQuA in 2010 and has continued to host and maintain the tool and support users. The purpose of the tool is to support quality assessment of palliative and end of life care services and benchmarking.

From a survey conducted last year and a review of its usage it is apparent that ELCQuA is not meeting user needs. We have, therefore, decided to withdraw the tool from 31 March 2016. We will continue to work with colleagues in NHS England to consider ways of supporting quality monitoring and improvement. Please let us know if you have any suggestions.

For more information contact neolcin at phe dot link

Royal College of Nursing: Getting it right every time

NHS Improving Quality has supported the Royal College of Nursing’s new online tool designed to offer support in delivery of appropriate end of life care alongside existing training, with a particular focus on nutrition and hydration.

Access the resource.

Quality of Life research funding call

3 August 2015

The Brain Tumour Charity have recently launched their Quality of Life research funding call. They are seeking applications and are happy to consider applications looking at end of life issues. The closing date for response is Monday 12 October 2015.

More information is available from their website.

NICE consults on draft guidance to help the NHS care for us in our last few days of life

29 July 2016

The National Institute for Health and Care Excellence (NICE) has today published a draft guideline to support the NHS in providing high quality and compassionate care for people who are dying. PHE welcomes this as an important adjunct to improving end of life care. The NICE guideline will help doctors and nurses identify when an individual is entering their final days of life and includes recommendations on the management of common symptoms, clear communication and medication prescribing.

For more information view the NICE press release.

Cancer Taskforce publishes Cancer Strategy

27 July 2015

Six strategic priorities have been recommended by the Independent Cancer Taskforce to help the NHS achieve world-class cancer outcomes:

  1. A radical upgrade in prevention and public health.
  2. A national ambition to achieve earlier diagnosis.
  3. Patient experience on a par with clinical effectiveness and safety.
  4. Transformation in support for people living with and beyond cancer.
  5. Investment to deliver a modern high-quality service.
  6. Overhauled processes for commissioning, accountability and provision.

Duncan Selbie, chief executive of Public Health England, said:

“Four in ten cancers are preventable and without concerted action on risk factors like smoking, alcohol and diet, cancer will spread even greater misery to those affected. The Cancer Taskforce rightly state that we need a radical upgrade in prevention and public health.

“PHE plays a critical role in the national response to cancer, including providing the data and intelligence on which the NHS depends, and we warmly welcome the Taskforce’s report. We look forward to considering the recommendations, especially the action plans to reducesmoking and tackle obesity, in detail, and working with our partners to realise the vision of a society that is serious about prevention.”

Download Achieving World-class Cancer Outcomes. A strategy for England 2015-2020.

Results of the 2014 National Survey of Bereaved People

10 July 2015

The Office for National Statistics (ONS) have published their 2014 report for the annual National Survey of Bereaved People (VOICES).

Visit the ONS website.

New end of life care profiles for clinical commissioning groups

6 July 2015

The National End of Life Care Intelligence Network (NEoLCIN) has updated the end of life care profiles for clinical commissioning groups (CCGs). The profiles have been updated with new data for 2011-2013 and draw together a wide range of information to give an overview of variations in cause and place of death, by age and sex, for each CCG in England. 

For more information and to view the profiles, see End of life care profiles for CCGs

What we know now 2014

26 June 2015

The National End of Life Care Intelligence Network has published a new report, the third in a series. ‘What We Know Now 2014’ summarises the key findings of the network and its partners over the last year, bringing information together in one report for the first time. The report shows a growing understanding within the health sector of what is important to people at the end of life and confirms that the number of people dying at home and in care homes continues to rise.

Download the report, What we know now 2014

View the media release

Rise in patient numbers for specialist palliative care

3 June 2015

Increasing numbers of people are accessing specialist palliative care across all settings - especially community-based services - according to a new report out today from the National Council for Palliative Care, Public Health England and Hospice UK.

Latest figures from the authoritative Minimum Data Set for Specialist Palliative Care (MDS) for 2013-14 show that the average number of patients per service has risen for all specialist palliative care settings and service types by since 2008.

Community care specialist palliative services in particular are seeing increasing numbers of people, in line with moves to enable more people to be cared for at home. Dementia is becoming an increasing issue for community care specialist palliative care teams, with five times as many people with dementia accessing community services in 2013/14 compared with 2008/09. The proportion of older people (aged 85 and older) seen by community teams has also continued to increase, as it has for hospital support teams.

View the NCPC Media release.

Download the report from the NCPC website.

Feedback requested on the national survey of the bereaved (VOICES)

20 May 2015

NHS England is responsible for commissioning a national survey on the quality of care in the last three months of life. The survey, Views of Informal Carers – Evaluation of Services (VOICES) collects information on bereaved peoples’ views on the quality of care provided to a relative or friend in the last three months of life, for England.

NHS England is seeking views on the current VOICES survey. They have set out specific areas which they are keen to get views on but have also left a section open for people to feedback comments or ideas more generally. You can respond to all or just one/a small number of questions.

The consultation is open to anyone who has an interest in this area.

The consultation will run from Friday 27th March until Friday 19th June 2015.

To take part in the consultation.

Dying Matters Awareness Week

18-24 May 2015

Every year in May, Dying Matters and their coalition members host a fantastic range of events and activities around the country with the aim of getting people talking about dying, death and bereavement and making plans for their end of life. This year is the sixth annual Dying Matters Awareness Week, which runs from 18 - 24 May 2015.

Find out how you can support this week of awareness-raising here.

National Council for Palliative Care – Public Opinion on death and dying

20 May 2015

Millions of people in Britain risk missing out on having their end of life wishes met and leaving their affairs in a mess for their families to sort out because they haven’t planned for their death, according to a new study released by the Dying Matters Coalition

ComRes research finds that although the majority of us think it is more acceptable to talk about dying now than it was 10 years ago, discussing dying and making end of life plans remains a taboo, as a majority think that people in Britain are uncomfortable discussing dying, death and bereavement.

Visit the National Council for Palliative Care’s website.

Dying without dignity

20 May 2015

The Parliamentary and Health Service Ombudsman has investigated complaints about end of life care and have issued a report. The short report features 12 cases that illustrate the issues they regularly see in their casework on end of life care. The examples represent a diverse collection of powerful stories, drawn from a range of different health care settings. They are from all parts of the country and represent different areas of concern.

Find more information and download the report.

Equity in the Provision of Palliative Care in the UK: Review of Evidence

18 May 2015

The Personal Social Services Research Unit (PSSRU) at the London School ofEconomics and Political Science (LSE) was commissioned by Marie Curie to explore theevidence on equity in palliative care and to consider the economic implications of extendingpalliative care to those currently under-served. This report presents the findings from atheir review of the research literature and nationally available data, and new multivariate analyses of data from the National Survey of Bereaved People in England, 2013.

View the report.

Head, hands and heart: asset-based approaches in health care Report

18 May 2015

The Health Foundation Inspiring Improvement have launched a new report, Head, hands and heart: asset-based approaches in health care. This report summarises the theory and evidence behind asset-based approaches in health care and wellbeing and gives details of six case studies, describing these approaches in action.

View the report.

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