News

See also the Public Health England website. 

Joint statement on the minimum data set for specialist palliative care services

16 February 2017

Public Health England (PHE), the National Council for Palliative Care (NCPC) and Hospice UK regret to announce that the National Minimum Data Set collection for Specialist Palliative Care Services (MDS) will no longer be collected with effect from 31 March 2017. The reasons are partly financial, but perhaps more importantly, in order to remain relevant, the MDS would need extensive review and change. As it currently stands, it is not giving us the information we need at the right level. We know that this may come as disappointing news to many people working or interested in specialist palliative care. The purpose of this joint statement is to explain these reasons in more detail and what follows from it.  


Cost-effective commissioning of end of life care

9 February 2017

The National End of Life Care Intelligence Network and Health Economics team in PHE have published a number of products to support commissioning decisions for end of life care services.  These include:

A report ‘Understanding the health economics of palliative and end of life care’. The first half of the report presents the findings of a review of the available literature on the costs and effectiveness of different initiatives and schemes designed to improve patients and carers experiences at the end of the patient’s lives. The second half of this report describes the new end of life care economic tool and the methodology underpinning this tool.

An end of life care analytical tool. This interactive tool is made up of two components. The first provides a summary of the costs, impacts and wider issues associated with different interventions and services for providing care and support for patients at the end of their lives. The second component enables the user to explore the potential trade-offs associated with shifting resources and activity away from secondary care into primary, community and social care settings.

The end of life care analytical tool user guide. This document provides a step-by-step guide to the end of life care economic tool.

These products will be of great importance for decision-makers. They will help them when they are considering the potential improvement, or indeed the potential decline, in the quality and safety of care, and patient experience, in conjunction with the net financial implication, when considering the implementation of interventions. Moreover, they will assist stakeholders when looking at current capacity of care provision and whether it can adequately cope with a potential influx of primary, community and social care activities for end of life care.

Download the report, analytical tool and user guide.


Survey: We want you to tell us how you support care homes to provide end of life care

9 January 2016

NEoLCIN in collaboration with National Council for Palliative Care, Hospice UK, Marie Curie Palliative Care Research Centre and Cardiff University are working together to find out how care homes are supported to deliver end of life care to residents.

We are conducting a supplementary survey linked to the Minimum Data Set (MDS) for specialist palliative care providers that will increase our understanding of:

  • the current geographical spread of services provided by Specialist Palliative Care Units (SPCUs) to adult care homes in England and Wales
  • the level of clinical support, education and training provided by SPCUs to adult care homes in England and Wales

The survey closes at 5pm on Monday 23 January 2017.

The survey results will be published in Spring 2017 providing a baseline for future developments across this important area of care.

Survey is now closed


Public Health England and NHS England publish an evaluation of the palliative care clinical data set

14 December 2016

Public Health England and NHS England have published two new reports; Evaluation report and the Guidance and definitions report on the Palliative Care Clinical Data Set.

These reports present a new voluntary data set for specialist palliative care (SPC) services and the processes which have underpinned its development. They describe the process and its impact on providers on implementing a specialist palliative care clinical data set. The data set supports both the recording of palliative care currencies for commissioning, and the use of Outcome assessment and complexity collaborative (OACC) monitoring tools for driving local improvement of clinical care.

Evaluation report

This Evaluation report presents the story of pilot work to collect data about outcomes achieved for individuals by specialist palliative care services. It contains the lessons learned within the project and makes recommendations for the future. Download the report: Palliative care clinical data set Evaluation report

Guidance and definitions

The palliative care clinical data set presented in this document describes a set of data items that can be implemented voluntarily. It specifies the conditions for collecting this data in a way that enables systematic and standardised measurement, analysis and comparison of some of the key outcomes that matter most to people who receive specialist palliative care.  Download the report: Palliative care clinical data set Guidance and definitions

Both reports should be read alongside each other.


Electronic Palliative Care Co-ordination System (EPaCCS)

National Data Project

5 December 2016

EPaCCS enable the recording and sharing of people’s care preferences and key details about end of life care.

Last year NEoLCIN undertook a study to better understand the impact of EPaCCS nationally, look at geographical variations in EPaCCS data, understand the potential challenges/barriers and opportunities associated with collating EPaCCS data. The study also explored the effectiveness of EPaCCS in achieving people’s preferences for care and supporting the co-ordination of care and advance care planning.

Key findings from the study include:

  • more than one-third of people on EPaCCS are aged 85 and over with a further 44% aged 65 to 74 years
  • just over half (56.5%) are female
  • cancer is the most common diagnosis for patients on EPaCCS; patients often hadmultiple diagnoses
  • one-third of patients on EPaCCS dies at home and under 20% died in hospital
  • of patients expressing a preferred place of death, half preferred to die at home; of these 30% died in their preferred place of death (home)
  • data completeness for any given item of information ranged from over 90% to under 1%

Download the report Electronic Palliative Care Co-ordination Systems National Data Project.


New survey launched today: We want you to tell us how you support care homes to provide end of life care

1 December 20216

NEoLCIN in collaboration with National Council for Palliative Care, Hospice UK, Marie Curie Palliative Care Research Centre and Cardiff University are working together to find out how care homes are supported to deliver end of life care to residents.

We are conducting a supplementary survey linked to the Minimum Data Set (MDS) for specialist palliative care providers that will increase our understanding of:

  • the current geographical spread of services provided by Specialist Palliative Care Units (SPCUs) to adult care homes in England and Wales
  • the level of clinical support, education and training provided by SPCUs to adult care homes in England and Wales

The survey closes at 5pm on Friday 6 January 2017.

The survey results will be published in Spring 2017 providing a baseline for future developments across this important area of care.

To take part in the survey please go to https://cardiff.onlinesurveys.ac.uk/specialist-palliative-care-support-to-care-homes-survey


Care Quality Commission launch ‘State of Care’ report

30 November 2016

The Care Quality Commission (CQC) have launched this year’s State of Care report. This shows that most health and adult care services in England are providing people with safe, high quality and compassionate care, but it also raises concerns about the sustainability of this position in the future.


New training video on end of life care training

30 November 2016

NHS Employers has produced a new video conveying the benefits of working collaboratively to deliver high quality care to patients at the end of life. View the video: http://ow.ly/jVXt3047kGx. You can view all the end of life care resources from NHS Employers at www.nhsemployers.org/endoflifecare


Together for Short Lives launch ‘You Can Be That Nurse’

30 November 2016

Together for Short Lives have launched You Can Be That Nurse, a campaign to encourage nurses to work in the sector and student nurses to consider children’s palliative care as a career.


Hospice UK launch new report Hospice Care in the UK 2016

30 November 2016

Hospice UK have produced a new report Hospice Care in the UK 2016 which highlights new research into the high level of community-based care provided by the UK’s hospices.


National Institute of Nursing Research

30 November 2016

NIH Institute for end of life research supports science to assist individuals, families, and health care professionals in managing the symptoms of life limiting conditions and planning for end of life decisions. Activities in this area address issues such as: relieving symptoms and suffering; and understanding decision-making by patients, caregivers, and provider. More information about this research area.


New resource from Compassion in Dying

30 November 2016

To mark World Mental Health Day in October, Compassion in Dying have launched a new resource produced in collaboration with Mind called Advance Decisions and Mental Health. Their blog explains more about the factsheet.


A human rights approach to end of life care—new guide and training for practitioners

30 November 2016

A new guide has been developed by The British Institute of Human Rights and Sue Ryder called End of Life Care and Human Rights: A Practitioner’s Guide.


Adult social care funding: 2016 state of the nation report

30 November 2016

The Local Government Association have launched a new report, Adult social care funding: 2016 state of the nation report.


Proportion of people dying with a recorded dementia diagnosis more than doubles since 2001

29 September 2016

In October Public Health England launched a range of products which examine the deaths of people recorded with dementia between 2012 and 2014.

The number of deaths with a mention of dementia was 6.6% of all deaths in 2001 and 15.8% of deaths in 2014 of all deaths in 2014. This is most likely due to an increase in awareness and recording of dementia.

The new reports were produced by the Dementia Intelligence Network (DIN) in collaboration with the National End of Life Care Intelligence Network (NEoLCIN) and draw on national data to see if there have been changes in dementia deaths over time, who the people dying with dementia are, where they die and what of.

The findings suggest that people who live in more deprived areas die with dementia at a younger age than those with dementia who live in more affluent areas.

There are also considerable differences between the place of death for people who have dementia and the general population. People with dementia are considerably more likely to die in hospitals and care homes and less likely to die at home or in end of life care settings such as hospices.


New edition of Minimum Data Set highlights vital trends in end of life care

6 September 2016

There has been a steady increase in the proportion of people admitted into specialist palliative care services who were admitted from hospital and a corresponding reduction in those admitted from home 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 2014-15 show there has been a steady increase in the proportion of people whose stay in inpatient specialist palliative care services ends with their death.

This survey serves as a reminder that access to specialist palliative care for patients with a non-cancer diagnosis remains a challenge; improvements are happening but are slow. 29% of people who died in 2014 died of cancer, yet cancer accounts for at least 60% of diagnoses seen in any specialist palliative care setting

View the media release.

Download the report from NCPC's website.


Being Accepted Being Me

19 August 2016

The University of Nottingham and National Council for Palliative Care (NCPC) have published a new guide called ‘Being Accepted Being Me’ on end of life care for other lesbian, gay, bisexual and transgender (LGBT) people.


Every Community Prepared to Help

19 August 2016

Every Community Prepared to Help has been published by National Council for Palliative Care (NCPC), Public Health Palliative Care UK and Hospice UK and contains a range of practical ideas for working with hospices, hospitals, Health & Wellbeing boards, CCGs and other relevant organisations in rolling out community developing in end of life care.


Workforce intelligence: the national minimum data set for social care

19 August 2016

Skills for Care have now produced a report The size and structure of the adult social care sector and workforce in England, 2016.  The report provides a comprehensive overview of the size and structure of the adult social care sector and workforce in England as at 2015.


New online guidance on difficult conversations

19 August 2016

Independent Age have produced new online guidance to help families have difficult conversations.


Building bridges, breaking barriers: Integrated care for older people

19 August 2016

The Care Quality Commission have published a report which sets out their findings into how health and social care services work together to deliver care for older people that is integrated.


Clinical Epidemiology Webinar Series

2 August 2016

PHE's Clinical Epidemiology team oversee the production of evidence and intelligence across four main areas: The Variation and Value Service, National End of Life Care Intelligence Network, Learning Disabilities Observatory and Liver Disease Intelligence.

We are delighted to announce the launch of our Clinical Epidemiology Webinar Series. The series of six webinars will run from October to March and will promote many products that the team will publish throughout the year. Topics include: healthcare variation in liver disease  and diabetes, using GP data to explore service variation for learning disabilities, and a focus on care homes and end of life care. Each webinar will consist of an overview of the topic, with the opportunity to ask questions and get answers from the presenter and the webinar host. The webinars will be live and last for one hour. 

By joining the webinar participants should become more familiar with the work of the Clinical Epidemiology Team. They will also develop skills and knowledge in using our data and information to understand variation in health care. This will be particularly useful in preliminary investigative work, planning and service monitoring.

For more information and to sign up to the webinars, view the Clinical Epidemiology Webinar Series flyer.


New guidance launched on community development in end of life care

1 August 2016

A new guide has been published by National Council for Palliative Care (NCPC), Public Health Palliative Care UK and Hospice UK. The guide contains a range of practical ideas for working with hospices, hospitals, Health & Wellbeing boards, CCGs and other relevant organisations in rolling out community development in end of life care.

Download the guide: Every Community Prepared to Help.

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