See also the Public Health England website.
Joint statement from PHE and NHS England on the Palliative Care Clinical Data Set and Palliative Care Currencies
5 April 2016
Public Health England and NHS England have published a joint statement to update on the development of the Palliative Care Clinical Data Set and Palliative Care Currencies.
Download the statement here.
Updated End of Life Care Profiles
5 April 2016
The place of death, and cause of death statistics available in the End of Life Care Profile have been updated with 2014 data, the most recent available from ONS.
The profile contains a range of indicators relevant to end of life care for LAs and CCGs; in addition to place and cause of death statistics these include indicators of dementia prevalence, care home admissions, nursing home populations and delayed transfers of care
Visit the End of Life Care Profiles for more information.
Updated Death in Usual Place of Residence Statistics
5 April 2016
An update of place of death has been released. This data is produced by the Office of National Statistics and includes the key indicator Death in Usual Place of Residence (DiUPR), and place of occurrence data (hospital, home, care home, hospice or elsewhere) each of which are available for various geographies including Local Authorities (LA) and Clinical Commissioning Groups (CCG). The most recent data is now for the 12 months including September 2015 on the public website, or December 2015 for registered users.
There has been a minor change in the definition of the place of occurrence statistics, although the DiUPR remains unchanged; see website for more details.
Paper: Factors associated with hospital deaths in the oldest old: a cross sectional (Pocock et al)
4 April 2016
To study associations between the likelihood of hospital death with patient demographics, cause of death and co-morbidities for people aged ≥85 at death who have been previously admitted (within 12 months of death) to hospital.
Download the paper.
End of Life Care Audit – Dying in Hospital: National report for England 2016
4 April 2016
The End of Life Care Audit – Dying in Hospital: National report for England 2016 presents the results of the second biennial national audit of care of the dying in hospitals in England. This second round of audit is based on data collected during 2015 from two lines of enquiry – an organisational audit of services, as well as a case note clinical audit. An executive summary, which summarises the key findings and recommendations as presented in the full national report is also available to download.
Compassion in dying launch My Decisions
4 April 2016
Compassion in Dying (CiD) has launched MyDecisions - the UK’s first website that allows patients to draft an Advance Decision or Advance Statement online for free.
www.MyDecisions.org.uk was created in response to the growing concerns surrounding low numbers of individuals planning ahead for their future treatment and care, should they lose capacity.
New resource to help people benefit from social work at the end of their life
23 March 2016
A new resource that aims to ensure that people benefit from good social work at the end of their lives has been published by the Association of Palliative Care Social Workers and the British Association of Social Workers.
The resource outlines what palliative care social work involves, sets out the skills and knowledge that palliative care social workers should have, and makes suggestions of steps that people can take to ensure that everyone can get more out of palliative care social work.
It is available to download from the Association of Palliative Care Social Workers website.
Life expectancy: recent trends in older ages
17 February 2016
This report summarises the relevant trends and provides some context for those trying to assess the significance of recent apparent changes.
The report confirms an overall upward trend in life expectancy in this age group in England since the early 1980s.
Download the report.
End of Life Care Profiles updated on Fingertips
2 February 2016
On 2 February 2016, dementia-specific indicators were added to the End of Life Care Profiles. They include directly standardised mortality rates, death in usual place of residence, place of death, etc. for people who died with a diagnosis of dementia. They are presented at CCG and County/Unitary Authority levels.
You can view the profiles on PHE’s Fingertips platform.
More dementia related indicators are available in Public Health England’s (PHE’s) Dementia Profile, also available on Fingertips.
Faith at end of life: a resource for professionals, providers and commissioners working in communities
1 February 2016
This resource aims to help frontline professionals and providers working in community settings and commissioners maintain a holistic approach to the people dying, caring or bereaved.
It provides information to help ensure that commissioning and delivery of services and practice takes account of spiritual needs of the largest six faith groups in England and remains appropriate to the community setting in which they work.
Download the report: Faith at end of life: a resource for professionals, providers and commissioners working in communities.
Update to Palliative Care Co-ordination: core content (SCCI1580)
25 January 2016
The following supplemental information has been identified in relation to SCCI1580 Amd 11/2015 Palliative Care Co-ordination: core content published on 18 September 2015:
- confirmation of the release of terminology codes
- impact of the uplift of SNOMED CT to the international edition
- clarification of interoperability requirements on behalf of NHS England.
Details can be found in a corrigendum, which is published on the Health and Social Care Information Centre (HSCIC) website.
Marie Curie publishes new research impact report
22 January 2016
Marie Curie has launched its first research impact report, From research to policy and practice. The report showcases how their investment in palliative and end of life care research is helping improve care for people living with a terminal illness throughout the UK.
Download the full report from the Marie Curie website.
NICE publishes new guidelines on caring for adults at the end of their lives
21 December 2015
The National Institute for Health and Care Excellence (NICE) has launched the first guidelines for the NHS on improving care for people who are in their last days of life.
The guidelines aim to put the dying person at the heart of decisions about their care, so that they can be supported in their final days in accordance with their wishes.
Read the news item from NICE and download the guidelines.
Revised Transforming end of life care in acute hospitals: The route to success ‘how to’ guide launched
18 December 2015
This revised and updated version of the Transforming end of life care in acute hospitals: The route to success 'how to' guide, marks a significant milestone to improve the quality and experience of care at end of life for patients and their families. Commissioned by NHS England, the publication offers practical advice and support for frontline clinicians and leaders for the work required to transform end of life care in acute hospitals.
Find out more and download a copy of the guide.
More end of life care data/indicators available on PHE’s Fingertips
9 December 2015
New end of life care indicators are now available in Fingertips. Three new domains have been added namely:
Mortality - Directly Age Standardised Mortality Rate and percentage of deaths for age groups 0-65, 65-74,75-84, 85+.
Death in Usual Place of Residence (DiUPR) - Percentage of DiUPR for age groups 0-65, 65-74,75-84, 85+.
Relevant indicators from other profiles – A collection of some indicators from other published profiles that may be relevant to end of life care.
Information can be found on Fingertips.
Place of death statistics
9 December 2015
The statistics for the rolling year ending Q1 2015/16 have been published on the NEoLCIN website. The proportion of deaths in usual place of residence continues to increase - 45.7% of all deaths in England up from 45.1% for rolling year ending Q3 2014/15 (38% in 2008).
All statistics are reported by CCG, local authority, strategic clinical network, PHE Centre and national. We hope that these additional statistics will be useful to commissioners and planners. There is significant variation between local areas.
For more information visit the Place of death web pages.
NICE publishes guideline on transition from hospitals to community care
9 December 2015
National Institute for Health and Care Excellence (NICE) has published its guideline on transition from inpatient hospital settings to community care for adults with social care needs.
This guideline covers the transition between inpatient hospital settings and community or care homes for adults with social care needs. It aims to improve people's experience of admission to, and discharge from, hospital by better coordination of health and social care services.
More information is available on the NICE website.
End of life care themed review launched
8 December 2015
The National Insititue for Health Research (NIHR) Dissemination Centre has launched its first themed review – a new independent report which compiles published and ongoing NIHR funded research into end of life care.
Better Endings brings together evidence from the NIHR, focusing largely on the quality and organisation of care. The review aims to help those delivering, planning or using end of life services to ensure that the right care is delivered in the right place at the right time.
The themed review aims to help NHS decision makers by presenting the findings of 17 NIHR studies in a clear and comprehensive way. It also highlights 12 pieces of ongoing NIHR funded research that are evaluating new and existing care initiatives, such as ‘hospice at home’ and a new data sharing service to improve continuity of care.
Better Endings is available to download on the NIHR Dissemination Centre website.
e-ELCA: Supporting Training in End of Life Care
12 November 2015
Health Education England's e-learning programme End of Life Care for All (e-ELCA) aims to enhance the training and education of the health and social care workforce so that well-informed high quality care can be delivered by confident and competent staff and volunteers to support people wherever they happen to be.
There are over 150 highly interactive sessions available.
See the e-ELCA information leafletor visit the website.
Call for case studies of good practice in end of life care
6 November 2015
SCIE (Social Care Institute for Excellence) has issued a call for case studies of good practice in end of life care.
SCIE are looking to gather new ideas about how best to support people and their families at the end of life in a range of settings – in patients’ homes, care homes and in hospital.
Case studies should highlight what makes a service special, draw out innovative elements of the work and give readers ideas they might use in their own practice.
Submitted case studies will sit within SCIE’s end of life care hub, alongside other ‘ideas for practice’ and resources on end of life care.
If you are interesting in supporting this project by summiting a case study please contact Pamela at pamela.holmes at scie dot org.uk link
More data live in PHE Fingertips
4 November 2015
New end of life care indicators are now available in Fingertips
- percentage of deaths for age groups 0-65, 65-74,75-84, 85+
- percentage of Deaths in Usual Place of Residence (home plus care home) for age groups 0-65, 65-74,75-84, 85+
Indicators are reported by Government Office Region, Strategic Clinical Network (SCN), CCG, County and Unitary Authority (upper tier local authorities) and District and Unitary Authority (lower tier local authorities).
Information can be found on Fingertips.
Marie Curie’s annual grants programme for palliative and end of life care research opens
30 October 2015
Marie Curie has launched its largest-ever call for research, in partnership with the Scottish Government Chief Scientist Office (CSO) and the Motor Neurone Disease Association (MND Association).
The partnership is calling for applications that address research priorities identified in the Palliative and end of life care Priority Setting Partnership (PeolcPSP), which asked carers, health and social care professionals, and people with terminal illnesses to identify what they thought were the most pressing areas of focus for palliative and end of life care research.
For more information visit the Marie Curie website.
New resuscitation guidelines highlight importance of talking about end of life care
27 October 2015
Every five years the Resuscitation Council (UK) updates its resuscitation guidelines, based on the latest available science, and the new 2015 guidelines were published earlier this month.
The resuscitation guidelines contain detailed information about basic and advanced life support for adults, paediatrics and the newborn. Also included are guidelines for the use of automated external defibrillators and other related topics.
The 2015 resuscitation guidelines can be downloaded from the Resuscitation Council (UK) website.
New publication for commissioners on enabling people to stay out of hospital at the end of life
27 October 2015
The National Council for Palliative Care (NCPC) has published a new report on enabling people to stay out of hospital at the end of life. Getting serious about prevention: enabling people to stay out of hospital at the end of life, warns that the NHS is paying too much to care for people approaching the end of life in hospitals, where they often do not want or need to be. The report makes a number of recommendations for commissioners, service providers and health and social care staff.
The report can be accessed on the NCPC’s website – where hard copies can be also purchased.
State of Care 2014/15
27 October 2015
The Care Quality Commission (CQC) have produced a new report, State of Care. This annual report draws on findings from their new, more through inspections across all of the sectors they regulate. They are starting to build a comprehensive picture of quality across England and identify the elements that drive high-quality care.
Download State of Care from the CQC website.
New report: Developing data and intelligence for end of life care
22 October 2015
Between September 2014 and March 2015, PHE’s NEoLCIN team held one-day workshops with nine of the strategic clinical networks (SCNs) that took up our offer of a consultation event. The workshops were an opportunity to learn from one another and build understanding about how best to improve end of life care data and intelligence and provided a platform for local and national leadership on relevant issues.
This report summarises the priorities for future improvements to end of life care data and intelligence that were identified by over 700 participants across nine SCNs.
Download the report – Developing data and intelligence for end of life care
Most hospices are ‘Good’ or better, says CQC
12 October 2015
According to new data from the Care Quality Commission (CQC), hospices in England are caring for and supporting people in a compassionate way at the end of their lives. The regulator’s latest ratings data shows that over 90% (34 out of 37 hospices) inspected so far have been judged to be providing Outstanding or Good care.
View the press release on CQC’s website.
End of life care profiles on fingertips
9 October 2016
End of life care indicators are now live on PHE fingertips. The new End of Life Care Profiles aim to improve availability and accessibility of information around end of life care. The profiles provide a snapshot overview for each Government Office Region, Strategic Clinical Network, clinical commissioning group and upper and lower tier local authorities. They are intended to help local government and health services improve care at the end of life, and provide comparative information on place of death by age. The profiles include detailed analysis of mortality data by Underlying Cause of Death and Place of Death and include trend data 2004-2013. The National End of Life Care Intelligence Network (NEoLCIN) will be adding new indicators to these profiles over the coming months.
UK is the best place in the world to die, according to end-of-life care index
9 October 2015
The UK ranks first in the 2015 Quality of Death Index, a measure of the quality of palliative care in 80 countries around the world released today by The Economist Intelligence Unit (EIU).
Its ranking is due to comprehensive national policies, the extensive integration of palliative care into the National Health Service, a strong hospice movement, and deep community engagement on the issue. The UK also came top in the first Quality of Death Index, produced in 2010.
The Quality of Death Index, commissioned by the Lien Foundation, a Singaporean philanthropic organisation, is based on extensive research and interviews with over 120 palliative care experts from across the world.
For more information visit www.qualityofdeath.org or read the press release.
Updated guide provides people affected by suicide with both emotional and practical support
2 October 2015
People who have been bereaved by suicide have used their experiences to lead the revision of a support guide to help others affected by someone taking their own life.
Help is at Hand provides people affected by suicide with both emotional and practical support. The most recent official figures reveal 6,233 suicides of people aged 15 and over were registered in the UK in 2013 and suicide has far-reaching effects among friends, family, colleagues, and the wider community. Those bereaved by a suicide are at increased risk of mental health and emotional problems and may be at higher risk of suicide themselves, so receiving the right support is essential.
For the first time, individuals who have been bereaved by suicide have been the principal authors of the guide, with support from experts at Public Health England (PHE) and the National Suicide Prevention Alliance (NSPA). By giving editorial control to individuals with experience of bereavement for the first time it is hoped the updated ‘Help is at Hand’ will provide more relevant and personal guidance to others in this traumatic situation.
Improving palliative care data collection and end of life care co-ordination in England
25 September 2015
The National End of Life Care Intelligence Network has today published a statement updating on progress towards a new national data collection from specialist palliative care services.
The network has also announced publication of the revised national information standard Palliative Care Co-ordination: core content.
For more information, see the news story on the Public Health England website.
For more information about the proposed new data collection from specialist palliative care services, see the Palliative Care Clinical Data Set.
For more information about the revised national information standard for palliative care co-ordination, see the national information standard web pages.
Report of findings from Palliative Care Co-ordination Consultation
23 September 2015
PHE’s National End of Life Care Intelligence Network has published a report on the findings from an online consultation about the information standard End of Life Care Co-ordination: core content (now renamed, Palliative Care Co-ordination: core content), which was conducted earlier this year.
As a result of feedback from the consultation, changes to the Palliative Care Co-ordination: core content national information standard were published by HSCIC on 18 September 2015.
Download the report – Palliative Care Co-ordination:core content Consultation Report or visit the National Information Standard web pages.
Place of death statistics
22 September 2015
The statistics for the rolling year ending Q4 2014/15 have been published on the website. The proportion of deaths in usual place of residence continues to increase - 45.6% of all deaths in England up from 45.1% for rolling year ending Q3 2014/15 (38% in 2008)
We are pleased to announce that we have added additional statistics on place of death – reporting the numbers and proportions of deaths in home, care homes, hospital and hospice. All statistics are reported by CCG, local authority, strategic clinical network, PHE Centre and national. We hope that these additional statistics will be useful to commissioners and planners. There is significant variation between local areas.
The proportion of deaths in each location for this period is:
For more information visit the Place in Death pages.
PHE and NHS Improving Quality announce changes to the Palliative Care Co-ordination Information Standard - changes to be implemented by 1 March 2016
18 September 2016
Public Health England and NHS Improving Quality have made new changes to the national information standard, Palliative Care Co-ordination: core content – formerly known as the End of Life Care Co-ordination: core content (SCCI1580).
The standard defines what key information is to be held in Electronic Palliative Care Co-ordination Systems (EPaCCS) or other care co-ordination systems. The core content includes a person’s palliative and end of life care decisions and preferences, and aims to improve the co-ordination of care through better communication of people’s wishes and preferences at the end of life.
Following feedback from implementers, national consultation, national review and the phasing out of the Liverpool Care Pathway, changes have been made to ensure that it continues to meet user needs and remains fit for purpose.
- Change of title of the information standard – from End of Life Care Co-ordination: core content to Palliative Care Co-ordination: core content
- Coding updates for disability, functional status, carer and care workers and carer awareness of prognosis
- New data items for likely prognosis, awareness of cardiopulmonary resuscitation decision
- NHS number is now mandatory for collection
- Amendment to some data items including formal and informal carers, Do Not Attempt Cardiopulmonary Resuscitation decisions, preferred and actual place of death
- Guidance documents have been updated, including amendments for the consent model
For more information view the National Information Standard pages.
If you have any feedback or comments on implementing the standard or the supporting documentation, please contact neolcin at phe dot gov.uk link
Advance notification of a proposed new data collection from specialist palliative care services in England
14 September 2015
The Standardisation Committee for Care Information (SCCI) has published advance notification of a proposed information standard for a new data collection from adult specialist palliative care services in England.
It is the intention to collect data from July 2016, with full conformance planned for April 2017.
For more information about the proposed new data collection, see the Palliative Care Clinical Data Set web pages on PHE’s National End of Life Care Intelligence Network website .
Consultation on proposed individual-level data collection from specialist palliative care
PHE’s National End of Life Care Intelligence Network has published a report on the findings from an online consultation about the proposed new data collection, which was conducted earlier this year. The report shows that there is clear support from professionals for the data collection. It responds to individual comments and explains how the results will inform future decisions about the data set and plans for its collection. There will be further reporting on consultations with the public, patients and carers.
Please sign up to National End of Life Care Intelligence Network e-alerts to keep informed.
National framework for action urges local leadership to be at forefront of improvement in end of life care
8 September 2015
The National Palliative and End of Life Care Partnership, made up of statutory bodies including PHE, NHS England, the Association of Adult Social Services, charities and groups representing patients and professionals has developed a framework for action in making palliative and end of life care a priority at local level. Ambitions for Palliative and End of Life Care: A national framework for local action 2015-2020, is aimed at local health and social care and community leaders. It builds on the Department of Health’s 2008 Strategy for End of Life Care and responds to an increased emphasis on local decision making in the delivery of palliative and end of life care services since the introduction of the Health and Social Care Act 2012. This national framework for action sets out six ‘ambitions’ – principles for how care for those nearing death should be delivered at local level:
- Each person is seen as an individual
- Each person gets fair access to care
- Maximising comfort and wellbeing
- Care is coordinated
- All staff are prepared to care
- Each community is prepared to help
The framework identifies measures such as personalised care planning and shared electronic records that are needed to realise each of the six ambitions, and calls on Clinical Commissioning Groups, Local Authorities and Health and Wellbeing Boards to designate a lead organisation on palliative and end of life care and to work collaboratively to bring people together to publish local action plans based on population based needs assessments. Download Ambitions for End of Life Care at www.endoflifecareambitions.org.uk