2016 news
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.
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.
New end of life care information and training webpages launched
4 July 2016
NHS Employers have been working with Health Education England on a new programme of work which aims to support organisations to invest in the continuing professional development (CPD) and capacity building of staff in order to deliver high quality end of life care.
The end of life care webpages have a wealth of information and resources including:
an overview of end-of-life carea comprehensive list of e-learning resources to support staff with trainingA case study with Worcestershire Acute Hospitals Trust on how it has implemented mandatory end-of-life-care training within the trusttools to implement an end-of-life care strategy in your organisation
View NHS Employers website.
Research shows patient-centred outcome measures improve emotional wellbeing of patients
4 July 2016
The Cicely Saunders Institute have published an article in e-hospice. They report that professionals in palliative care can find it difficult to measure the impact of their care, especially when treating the complex symptoms and concerns of people with advanced or progressive illnesses.
For more information read the Cicely Saunder Institute article in ehospice.
Compassion in Dying launches free website for advance care planning
4 July 2016
Compassion in Dying has launched a free website to help people plan ahead for their future treatment and care. Jennifer Noel from Compassion in Dying tells us more about this service.
MyDecisions (www.MyDecisions.org.uk) is a website that allows people to draft an advance decision to refuse treatment or an advance statement online for free.
More information is available on the Compassion in Dying website.
Exposing the reality of end of life care for lesbian, gay, bisexual and transgender people
4 July 2016
Marie Curie have published a new report called ‘Hiding who I am: Exposing the reality of end of life care for LGBT people’. The report highlights the barriers faced by lesbian, gay, bisexual and transgender (LGBT) people in getting support at the end of life.
The full report can be downloaded from the Marie Curie website.
Hospice UK publish new report ‘A low priority? How local health and care plans overlook the needs of dying people’
20 May 2016
Hospice UK have published a new report on the priority of palliative and end of life care in local health and care need assessments and strategies. The report investigates how health and wellbeing boards (HWBs) and clinical commissioning groups (CCGs) address the palliative and end of life care needs of local people within their planning and decision-making.
The full report and appendices can be downloaded from the Hospice UK website.
Dying Matters Awareness Week
9 May 2016
Dying Matters Awareness Week runs from Monday 9 May to Sunday 15 May and their theme is The Big Conversation. Follow on social media using the hashtag #BigConversation.
There will be Tweet Chats every day during Dying Matters Awareness Week on Twitter between 1-2pm. There will be themes around death, dying and bereavement. Whether you have questions or could offers answers, please join in.
For more information on Dying Matters Awareness Week, visit Dying Matters.
Care Quality Commission publish a new report ‘A different ending: End of life care review’
9 May 2016
The Care Quality Commission (CQC) have published their report ‘A different ending: End of life care review’.
Download the report from the CQC's website.
National Council for Palliative Care publish a new report ‘Staff prepared to care?’
9 May 2016
The National Council for Palliative Care (NCPC) have published a new report ‘Staff prepared to care? Capacity and competence in the end of life care workforce’.
Download the report from NCPC's website.
Marie Curie annual palliative care research conference – call for abstracts
9 May 2016
Marie Curie is inviting abstracts for short presentations and posters on palliative and end of life care research ahead of its annual research conference, held jointly with the Palliative Care Section of the Royal Society of Medicine.
The aim of the conference, being held at the Royal Society of Medicine in London on 19 October 2016, is to support the translation of research findings into practice.
Abstracts should be no more than 250 words (excluding title, authors and affiliations) and in the following format: Introduction, Aim(s) and Method(s), Results, Conclusion(s).
The deadline for submitting abstracts is 17 June 2016. Further information on the conference and details of how to submit an abstract can be found on the Marie Curie website.
2015 National Survey of Bereaved People now available
9 May 2016
The Office for National Statistics (ONS) has published the results of the 2015 National Survey of Bereaved People.
Download the full survey report from the ONS website.
Improving palliative and end of life care
9 May 2016
NHS England’s Sustainable Improvement Team has recently refreshed the toolkit ‘Commissioning person centred end of life care’, which provides a valuable supporting resource for the commissioning process and an interactive directory of current tools. To complement this, NHS England’s ‘Specialist Level Palliative Care: Information for commissioners’ outlines a key part of the strategic and responsive commissioning system for delivering palliative and end of life care in any care setting.
Download Commissioning person centred end of life care.
Download Specialist Level Palliative Care Information for commissioners.
For more detailed information please refer to: NHS England » Realising ambitions: improving palliative and end of life care for all in three steps – Dr Sarah Mitchell.
NHS England’s independent evaluation of Electronic Palliative Care Coordination Systems (EPaCCS)
9 May 2016
NHS England’s Sustainable Improvement Team commissioned an Independent evaluation of Electronic Palliative Care Coordination Systems (EPaCCS). It was undertaken by Whole Systems Partnership (WSP) between November 2015 and March 2016.
For more information and to download the report, visit NHS England’s 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.