See also the Public Health England website.
What we know now 2014
26 June 2015
The National End of Life Care Intelligence Network has published a new report, the third in a series. ‘What We Know Now 2014’ summarises the key findings of the network and its partners over the last year, bringing information together in one report for the first time. The report shows a growing understanding within the health sector of what is important to people at the end of life and confirms that the number of people dying at home and in care homes continues to rise.
Download the report, What we know now 2014
View the media release
Rise in patient numbers for specialist palliative care
3 June 2015
Increasing numbers of people are accessing specialist palliative care across all settings - especially community-based services - 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 2013-14 show that the average number of patients per service has risen for all specialist palliative care settings and service types by since 2008.
Community care specialist palliative services in particular are seeing increasing numbers of people, in line with moves to enable more people to be cared for at home. Dementia is becoming an increasing issue for community care specialist palliative care teams, with five times as many people with dementia accessing community services in 2013/14 compared with 2008/09. The proportion of older people (aged 85 and older) seen by community teams has also continued to increase, as it has for hospital support teams.
View the NCPC Media release.
Download the report from the NCPC website.
Feedback requested on the national survey of the bereaved (VOICES)
20 May 2015
NHS England is responsible for commissioning a national survey on the quality of care in the last three months of life. The survey, Views of Informal Carers – Evaluation of Services (VOICES) collects information on bereaved peoples’ views on the quality of care provided to a relative or friend in the last three months of life, for England.
NHS England is seeking views on the current VOICES survey. They have set out specific areas which they are keen to get views on but have also left a section open for people to feedback comments or ideas more generally. You can respond to all or just one/a small number of questions.
The consultation is open to anyone who has an interest in this area.
The consultation will run from Friday 27th March until Friday 19th June 2015.
To take part in the consultation.
Dying Matters Awareness Week
18-24 May 2015
Every year in May, Dying Matters and their coalition members host a fantastic range of events and activities around the country with the aim of getting people talking about dying, death and bereavement and making plans for their end of life. This year is the sixth annual Dying Matters Awareness Week, which runs from 18 - 24 May 2015.
Find out how you can support this week of awareness-raising here.
National Council for Palliative Care – Public Opinion on death and dying
20 May 2015
Millions of people in Britain risk missing out on having their end of life wishes met and leaving their affairs in a mess for their families to sort out because they haven’t planned for their death, according to a new study released by the Dying Matters Coalition
ComRes research finds that although the majority of us think it is more acceptable to talk about dying now than it was 10 years ago, discussing dying and making end of life plans remains a taboo, as a majority think that people in Britain are uncomfortable discussing dying, death and bereavement.
Visit the National Council for Palliative Care’s website.
Dying without dignity
20 May 2015
The Parliamentary and Health Service Ombudsman has investigated complaints about end of life care and have issued a report. The short report features 12 cases that illustrate the issues they regularly see in their casework on end of life care. The examples represent a diverse collection of powerful stories, drawn from a range of different health care settings. They are from all parts of the country and represent different areas of concern.
Find more information and download the report.
Equity in the Provision of Palliative Care in the UK: Review of Evidence
18 May 2015
The Personal Social Services Research Unit (PSSRU) at the London School ofEconomics and Political Science (LSE) was commissioned by Marie Curie to explore theevidence on equity in palliative care and to consider the economic implications of extendingpalliative care to those currently under-served. This report presents the findings from atheir review of the research literature and nationally available data, and new multivariate analyses of data from the National Survey of Bereaved People in England, 2013.
View the report.
Head, hands and heart: asset-based approaches in health care Report
18 May 2015
The Health Foundation Inspiring Improvement have launched a new report, Head, hands and heart: asset-based approaches in health care. This report summarises the theory and evidence behind asset-based approaches in health care and wellbeing and gives details of six case studies, describing these approaches in action.
View the report.
The public health knowledge and intelligence workforce: A study
12 March 2015
The Centre for Workforce Intelligence has published the public health knowledge and intelligence report: a study. The report was commissioned by Public Health England (PHE) in partnership with Health Education England and the Department of Health, and aims to build a clearer understanding of the location, number, functions, skills and competences of the public health knowledge and intelligence workforce.
New Marie Curie survey
9 March 2015
A new survey by Marie Curie, released to coincide with the launch of the Marie Curie Great Daffodil Appeal, has revealed the top concerns people would have if they were faced with caring for a loved one with a terminal illness. Half (50%) of UK adults say that their loved one’s pain not being managed would be a top concern, followed closely by not having access to 24/7 care and support (44%).
More information is available on the Marie Curie Cancer Care website.
Call for national choice offer
9 March 2015
A report ‘What’s important to me: A review of Choice in End of Life Care’ was published in February by the Choice in End of Life Care Review Board, which was chaired by the National Council for Palliative Care (NCPC) Chief Executive, Claire Henry. It offers a blueprint for how greater choice in end of life can be achieved.
More information is available on NCPC's 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 email@example.com 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