See also the Public Health England website.
Report on Ambulance Data Project for End of Life Care
PHE’s National End of Life Care Network has published a new report following two projects carried out by North West Ambulance Service and South East Coast Ambulance Service. The aim of the project was to explore the collection and use of ambulance data in supporting delivery of end of life care.
The study found that frequently people approaching the end of life are not clearly identified in ambulance or medical records and the report recommends better identification and communication with the ambulance service. This will support ambulance professionals to make safe and appropriate care decisions
The work of the two pilots has triggered a decision to add a new end of life care guideline to the next edition of the UK Ambulance Services Clinical Practice Guidelines, which will be produced by the Association of Ambulance Chief Executives (AACE) in 2015.
For more information, Ambulance Data Project for End of Life Care
National General Practice Profiles for England
10 December 2014
The Knowledge and Intelligence Team East have released refreshed data for the National General Practice Profiles.
These profiles are designed to support GPs, clinical commissioning groups (CCGs) and local authorities to ensure that they are providing and commissioning effective and appropriate healthcare services for their local population.
Each practice can be compared with the CCG and England, and also with practices in areas with a similar level of deprivation.
Using a variety of graphical displays such as spine charts and population pyramids, the tool presents a range of practice-level indicators drawn from the latest available data, including:
- local demography
- quality and outcomes framework domains
- disease prevalence estimates
- admission rates
- patient satisfaction
View the National General Practice Profiles for England
Developing a new approach to palliative care funding: A first draft for discussion
27 October 2014
Based on a two year data collection from 11 sites covering both adults’ and children’s services, NHS England is developing a currency for palliative care which focusses on patient need. The aim of the work is to provide a transparent basis for palliative care commissioning.
NHS England’s initial thoughts on the currency model have been published to allow the palliative care community including clinicians, commissioners and providers to help shape its further development.
View the Developing a new approach to palliative care funding: A first draft for discussion
Please send any comments on the document or queries to england.pcf at nhs dot net link
Palliative Care Funding
17 October 2014
NHS England is currently developing a “currency” for palliative care - essentially a way of grouping patients according to their needs. The aim is to provide a transparent basis for palliative care commissioning.
A series of engagement events are being planned in the autumn to allow the palliative care community, including clinicians, commissioners and providers to help shape the development of the currency. These will take place:
- London, 29 October
- Leeds, 5 November
- Manchester, 6 November
- Birmingham 11 November
- Bristol, 12 November
If you would like to attend one of the events please email england.pcf at nhs dot net link
stating which event you would like to attend, your name, organisation, job title and whether you are interested in adults’ or children’s services. At each event they will be holding parallel sessions on children’s and adult’s services.
NHS England will be seeking to accommodate as many organisations as possible so where an event is oversubscribed we may need to operate a waiting list for multiple applications from a single organisation.
For more information please email england.pcf at nhs dot net link
NCPC publishes specialist palliative care workforce survey and warns of nursing crisis
9 October 2014
The latest annual edition of the National Council for Palliative Care’s Specialist Palliative Care Workforce Survey, which draws on findings from 2013, raises concerns that an ageing palliative care nursing workforce could in the future have a damaging impact on the care that terminally ill people receive.
The survey, commissioned by Public Health England, reveals that over four in ten (44%) of specialist palliative care nurses were over the age of 50 in 2013, a figure that has increased each year over the last five years. This is in contrast to 24% of palliative care consultants who are over the age of 50 – a significantly lower proportion than for medical consultants as a whole (37%). It is projected that numbers of people dying each year will increase from about 500,000 at present to about 586,000 by 2030.
Download the NCPC Specialist Palliative Care Workforce Survey 2013
For more information contact NCPC enquiries at ncpc dot org.uk link
What are your highest priority questions on palliative care?
8 October 2014
The Palliative and End of Life Care Priority Setting Project is bringing together organisations interested in palliative and end of life care to consult people likely to be in the last years of life, current and bereaved carers and families, and healthcare professionals about what questions they believe need answering through research.
Earlier this year, 1,400 patients, carers, family members and professionals, told the project their questions about palliative and end of life care, support and treatment. They have analysed all of the responses and now have 83 questions to be prioritised on topics from accessing services to managing symptoms and medications.
They need to know which questions are the highest priorities – so that money and time can be directed towards answering these questions first.
This is a unique opportunity to directly influence future research into care, support and treatment for people in the last few years of their lives.
Access the survey or visit the website
The survey closes: 26th October 2014
For more information, or to request a paper copy of this survey, please email peolcpsp at mariecurie dot org.uk link
Pathways through care at the end of life: A guide to person-centred care
7 October 2014
Congratulations to Katie Lindsey, who co-authored ‘Pathways through Care at the End of Life: A Guide to Person Centred Care’ which was highly commended at the prestigious BMA Medical Book awards 2014.
Exploring the cost of care at the end of life
7 October 2014
This report by the Nuffield Trust estimates the hospital and non-hospital costs for people in the last 90 days of life. It also explores whether reduced hospital activity and costs at the end of life were likely to be offset by increased care costs in other health and social care settings using the Marie Curie home-based palliative care nursing service. The results suggest that cost savings might be available if community-based support were made more widely available to help people to die in their own homes, where that was their preference.
View the report Exploring the cost of care at the end of life
NEoLCIN and NHS England Research Summit
25 September 2014
The National End of Life Care Intelligence Network and NHS England plan to hold an event for the palliative and end of life care research sector to gain a better understanding of the research areas underway and to explore ideas for working together. Academic, clinical and educational researchers from across the UK are invited to attend.
The one day event will be hosted by PHE and NHS England and will be held on Thursday 15 January 2015 at a venue in London.
The objectives of the day will be:
- To update on policy and roles in research - Public Health England and NHS England
- To gauge the extent to which current research can contribute to improving end of life care
- To explore what is needed to get from knowledge generation to impact on practice
- To provide a networking opportunity for the end of life care research community, funders and policy makers
To support the day, we are asking researchers to inform us about their areas of research in advance of the day by completing a short questionnaire. You will also be able to register your interest in attending this research summit.
Research questionnaire and registration of interest
The questionnaire closes on Friday 24 October.
For more information, contact neolcin at phe dot gov.uk link
Joint statement from PHE and NHS England on plans for improving palliative care data
25 September 2014
Public Health England and NHS England have announced they are working with the National Council for Palliative Care, Help the Hospices and the Cicely Saunders Institute to explore the feasibility, options and costs of the collection of individual level palliative care data.
It is the intention that this data will provide information about services and will align with and support the palliative care funding system being introduced by NHS England. Consultation on the data set has begun and further updates will be available in 2015. Data collection via the Minimum Data Set (MDS) will continue. Benefits and implications for CCGs will be established through the consultation. Please contact neolcin at phe dot gov.uk link
for more information.
View the Joint statement.
PHE Surveillance and health data products - a survey of data users
19 September 2014
The PHE Surveillance Group (PHESG) is carrying out a user survey to evaluate PHE surveillance and health data products.
The survey will gather views on all PHE data products including health protection data, health profiles and health improvement data tools and how well these products support public health actions.
The PHESG leads the priority programme work on surveillance, and is working to improve the effectiveness of PHE surveillance and health data outputs. Information from the survey will be fed back to owners of the surveillance systems and producers of health data products to help shape future developments.
If you use these products, please complete this survey so that we can improve our support.
The closing date for this survey is 8 October 2014.
Public health Pathfinders for end of life care sought
17 September 2014
Dying Matters' lead charity, the National Council for Palliative Care (NCPC), together with PHE have announced an exciting new opportunity to apply to be one of six Pathfinder Communities to pioneer a public health approach to end of life care in England.
For more information visit the NCPC website.
NHS Improving Quality’s new ‘Lessons learned’
19 August 2014
NHS Improving Quality have produced a new resource ‘Lessons Learned’ to support organisations planning implementation of an Electronic Palliative Care Co-ordination System (EPaCCS).
The document provides useful tips and information which has been collated from their intelligence networks and from working with sites who are currently implementing an EPaCCS system. Project leads provided insight from their experience and reflections on what they should or could have done.
Download Lessons Learned from their website.
New end of life guide from Motor Neurone Disease Association
14 August 2014
The motor neurone disease association has launched a new publication, End of life: a guide for people with motor neurone disease. The new guide provides comprehensive and candid information on how to plan ahead, in response to feedback from people with or affected by MND.
Download the new guide from their publications page.
Care plans in the paperless NHS consultation
5 August 2014
The Health and Social Care Information Centre (HSCIC) is currently consulting on the need for a new national information standard for care plans to improve the exchange of care information across health and adult social care. Note that care plans may be referred to as treatment plans, intervention plans, management plans and similar. They include palliative and end of life care plans as well as those for long term conditions.
The consultation is aimed at all users of care plans including health and social care providers, nursing staff and other clinicians, allied health and social care professionals.
The closing date for feedback is 29 August 2014.
Find out more about this consultation.
A national review of choices in end of life care - consultation
4 August 2014
The Government has set up a review of choices in end of life care. The review is being undertaken by an independent programme board, chaired by Claire Henry, the Chief Executive of the National Council for Palliative Care (NCPC). The information gathered will outline the kinds of choices that people would like to be able to make at the end of life and information about the funding, systems and processes that would be needed to enable choices to be acted upon.
A consultation on the review has now opened. To ensure the review is as comprehensive as possible, it is vitally important that a wide range of people are consulted about the choices that are important to them at the end of life, what they would mean in practice and whether and how they could be made a reality.
For more information and to take part in the consultation, see the NCPC website. This has links to the consultation survey, a downloadable printable response form (for postal responses) and also links to the events page where people can book online to attend consultation events to be held in Leeds and London.
National survey of bereaved people (VOICES), 2013 published
17 July 2014
The Office for National Statistics has published the results of this year's VOICES survey, commissioned by NHS England.
The statistical bulletin reports on the national results and provides comparisons with findings from the 2011 and 2012 VOICES surveys.
Key findings are:
- overall, quality of care has not changed significantly between 2011, 2012 and 2013
- quality of care was rated significantly lower for people who died in a hospital, compared to people dying at home, in a hospice or care home
- for those dying at home, the quality of coordination of care was rated significantly lower in 2013 compared to 2012
- the dignity and respect for patients shown by hospital nurses and hospice nurses has increased between 2011 and 2013
- pain is relieved most effectively in the hospice setting (62%) and least effectively at home (18%)
- only one third of people (35%) who express a preference to die at home, actually die at home.
For more information, visit the Office for National Statistics website.
Expanding choice and improving the quality of end of life care
3 July 2014
A review of choice in end of life care has been launched to make sure adults at the end of life, their carers and family have more choice.
The review will be undertaken by an independently-led programme board chaired by Claire Henry, Chief Executive of the National Council for Palliative Care (NCPC) which is the umbrella charity for all those involved in palliative, end of life and hospice care in England, Wales and Northern Ireland.
The review is a significant milestone in the government’s commitment to increasing choice in end of life care and will look at a variety of different aspects including what people want, the support they need and the services required to make choice a reality.
For more information view the full news item, or visit www.ncpc.org.uk or www.dyingmatters.org
Results of the National End of Life Care Intelligence Network’s impact evaluation
1 July 2014
PHE’s National End of Life Care Intelligence Network (NEoLCIN) has published the results of an impact evaluation of the network undertaken earlier this year. We sought views from a wide range of users and stakeholders on the perceptions, resources and impact the network has made since it started in 2010. A slide set summarises the key points. It is published alongside the main report and a document summarising our response to the feedback received.
View the Summary of results
View the Impact evaluation report
View the NEoLCIN's response and what we will do
If you have any further comments, please email firstname.lastname@example.org. We would also be delighted to hear about how you have used our data, tools and resources to help you in your work. Please send details to email@example.com.
New approach to care of the dying published
26 June 2014
A report, published today by the Leadership Alliance for the Care of Dying People, sets out a new approach to care of the dying in England based on the needs and wishes of the person and those close to them. It takes the form of five new Priorities for Care which replace the Liverpool Care Pathway as the new basis for caring for someone at the end of their life.
The priorities form part of the Alliance’s overall response, called ‘One Chance to Get it Right’, to an independent review of the Liverpool Care Pathway led by Baroness Neuberger.
Public Health England (PHE) is one of the 21 organisations that make up the Alliance, all of whom have committed today to support the Priorities for Care.
Professor Julia Verne, Clinical Lead for PHE’s National End of Life Care Intelligence Network said:
“Public Health England’s role is to protect and improve the nation’s health and to address inequalities through working with national and local government, the NHS, industry and the voluntary and community sector. We consider high quality care for dying people and their families to be an important public health issue. We are fully committed to the five Priorities for Care published by the Leadership Alliance for the Care of Dying People today and to improving care in the last few days and hours of life for people in England.
“We will do this by providing high quality information about end of life care to underpin the work of policy makers, commissioners, service providers and professionals, as well as to inform dying people and their families and contribute to a national conversation about dying. This includes the continuing work of the National End of Life Care Intelligence Network. We are also committed to examining ways to develop community approaches to support dying people and their families.”
For more information, and to download the report and commitment statements, see the Department of Health web pages.
New Mental Health Dementia and Neurology Intelligence Networks
18 June 2014
PHE launches a new health intelligence network in partnership with NHS England, supported by the Department of Health and key stakeholders.
The National Mental Health Dementia and Neurology Intelligence Networks, consisting of 4 pilot profiling tools, will support the delivery of improved physical and mental wellbeing services in local areas and reduce the negative impacts of ill health.
The Networks operate collectively and will provide commissioners, local decision makers and other health professionals with authoritative intelligence, research and evidenced best practice using the PHE Fingertips platform.
Visit the Mental Health Dementia and Neurology Intelligence Network
Report on deaths from head and neck cancers in England
11 June 2014
PHE’s National End of Life Care Intelligence Network has published a new report examining who dies from head and neck cancers and where they die. Head and neck cancers include lip, tongue and oral cavity cancer, pharynx and tonsil cancer, larynx cancer, thyroid gland cancer, salivary glands cancer, nose, ear and sinus cancer. The aim of this report is to help end of life care commissioners and providers improve planning and service delivery in line with the needs and wishes of the patient.
For more information, see Head and neck cancers in England: who dies from them and where do they die?
Download the report Head and neck cancers in England: who dies from them and where do they die?
Find out what the National End of Life Care Intelligence Network has been doing over the last year
10 June 2014
PHE’s National End of Life Care Intelligence Network (NEoLCIN) has published its first annual activity update. The NEoLCIN was established in 2010 to improve the data and intelligence available to support the NHS and its partners commission and deliver quality end of life care. The update provides a summary of activity across the network over the last year.
For more information, see Annual activity update 2014
Download the update Annual activity update 2014
Specialist palliative care services lead to more deaths at home
3 June 2014
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 from the National Council for Palliative Care (NCPC) 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 inpatient 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.
View the NCPC media release
Download the report National Survey of Patient Activity Data for Specialist Palliative Care Services