See also the Public Health England website.
Individual-level data collection Consultation
2 March 2015
Public Health England has published a consultation on plans to introduce a new national individual-level data collection from specialist palliative care services to support improvements in palliative and end of life care.
The proposed data collection includes demographic details, activity information and patient outcomes data. This data will also support the requirements of a palliative care currency. Please click here to find out further information, view the proposed data items and to respond to the online survey. We welcome your feedback.
The consultation will close at 5pm on Friday 27 March 2015.
End of Life Care Co-ordination (ISB1580) Consultation
2 March 2015
Public Health England has published a consultation on proposed changes to the national information standard for End of Life Care Co-ordination: core content (ISB1580).
This standard specifies the data items to be held in Electronic Palliative Care Co-ordination Systems (EPaCCS) and supports implementation. The proposed changes are in response to feedback from implementers and key stakeholders and to national policy change. Please click here to find out further information and to respond to the online survey. We welcome your feedback.
The consultation will close at 5pm on Friday 27 March 2015.
Individual-level data collection from specialist palliative care: Invitation to pilot
17 February 2015
In September 2014, a Joint Statement was issued by NHS England (NHSE) and Public Health England (PHE) setting out the ambition of both organisations to introduce an individual-level data collection to support quality improvement in specialist palliative care. Following extensive engagement throughout 2014, Public Health England is now seeking formal expressions of interest in piloting collection of individual –level data from specialist palliative care provider services. The data set includes demographic, activity and clinical outcome information and will also support the data-requirements of the draft palliative care currencies being developed by NHS England. Piloting will run through 2015/2016, seeking to establish the value, technical feasibility, training and support requirements of a new national data collection. Support and guidance will be provided for pilot sites.
The deadline for expressing an interest in piloting is Friday 27 February 2015.
Full details about the pilot and a copy of the data set is provided in an information pack which has been sent to specialist palliative care providers. If you have not received this and want to find out more, please contact neolcin at phe dot gov.uk link
New partnership to improve end of life care
9 February 2015
The National Council for Palliative Care (NCPC) and the National Care Forum (NCF) have today announced a new, strengthened partnership aimed at improving end of life care.
The two organisations have a track record of working collaboratively, and the new partnership is aimed at enabling NCPC subscribers and NCF members to further benefit from close links, shared learning and opportunities to work together.
For more information visit the NCPC or NCF websites.
End of life care research grants open for application
2 February 2015
The National Institute for Health Research’s Health Technology Assessment Programme is seeking proposals for clinical and applied health research into end of life care.
They are interested in proposals for the evaluation of interventions for the management of end of life care in people with non-cancer and cancer related conditions, particularly interventions for the last 30 days of life.
For more details and how to apply, visit the researcher-led webpage on the National Institute for Health Research website.
The deadline for applications is 1pm on 6 May 2015.
Key research collections from the National Institute for Health Research (NIHR)
2 February 2015
NIDR have brought together key collections of research for quick reference, which include a section on End of Life Care. Some of these collections have been the subject of cross-NIHR ‘themed calls’ for research addressing particular needs, while others have been collated to support NIHR or Government priorities based on patient benefit.
View the NIHR website.
New GUIDE_Care report published
22 January 2015
A new GUIDE_Care Report has been published. Geographical and temporal Understanding In place of Death in England (1984 2010): analysis of trends and associated factors to improve end. Gao W, Ho Y, Verne J, Gordon E, Higginson I.
View the report.
Top ten research priorities for palliative and end of life care revealed
15 January 2015
A 'top ten' of unanswered questions in palliative and end of life care has been published by the Palliative and end of life care Priority Setting Partnership (PeolcPSP).
The Partnership's final report was launched today at the Palliative and End of Life Care Research Summit and follows an extensive 18-month consultation, during which over 1,400 patients, carers and health and social care professionals helped determine the most important unanswered questions (i.e. gaps in existing evidence) that could improve overall care and experiences.
The Palliative and end of life care Priority Setting Partnership was initiated by Marie Curie in the summer of 2013 and involved around 30 other organisations and groups. The partnership (and methodology) was facilitated by the James Lind Alliance (JLA) and overseen by a Steering Group chaired by an independent JLA Advisor.
Download the final report from the Palliative and end of life care Priority Setting Partnership’s website.
Dying Well Community Charter pathfinders announced
8 January 2015
Public Health England and NCPC have today announced details of eight Pathfinder communities who are taking up the opportunity to pioneer a public health approach to end of life care in England.
The Pathfinder communities were chosen from 23 organisations that expressed an interest, and will be supported and led by local authorities, Clinical Commissioning Groups, Health and Wellbeing Boards, NHS and voluntary sector providers of health and social care. They eight chosen Pathfinder communities are:
- St John’s Hospice, Lancaster District
- The End of Life Partnership, Cheshire East, Cheshire West, Chester Local Authority Areas
- Weston Hospicecare, North Somerset
- Conscious Ageing Trust and Dorset Compassionate Community, Dorset
- Hackney Health and Wellbeing Board, Hackney
- Dove House Hospice, Hull and the East Riding of Yorkshire
- Birmingham Cross City (BCC) and Birmingham South Central (BSC) Clinical Commissioning Groups, Birmingham
- Liverpool Clinical Commissioning Group and Liverpool City Council, Liverpool
Pathfinders will be implementing the new Dying Well Community Charter and will receive support and resources from the NCPC and PHE to help their local community to work together to improve their response to people who are dying and those who have been bereaved. To help support local good practice, many of the Pathfinders will also support a “buddy” from another area.
For more information visit National Council for Palliative Care
Developing a new approach to palliative care funding: A revised draft for discussion
24 December 2014
NHS England have published Developing a new approach to palliative care funding: A revised draft for discussion. Based on a two year data collection from sites covering both adults’ and children’s services, NHS England is developing a currency for palliative care which focuses on patient need. The aim of the work is to provide a transparent basis for palliative care commissioning.
In October 2014 the NHS England Pricing Team published the first draft of the palliative care currency for discussion. The extensive feedback provided will be used to inform the ongoing work, and specific comments on the document itself have informed the revisions to this further publication.
Feedback on this revised draft is also welcomed. Please send any comments on the document or queries to firstname.lastname@example.org before 23 January 2015.
View the Developing a new approach to palliative care funding: A revised draft for discussion
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.