See also the Public Health England website.
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
Focus groups to feed into NICE guidance on care of children with life-limiting conditions
28 August 2015
Together for Short Lives has been commissioned by the National Institute for Health and Care Excellence (NICE) to collate the views of children and young people with life-limiting conditions about the services they use.
The charity, which supports children with life-threatening and life-limiting conditions across the UK, will hold three focus groups in September and October to listen to the opinions of those who use the services.
Their experiences will be used to inform new guidelines that NICE is developing about the care of children and young people with life-limiting conditions.
Visit ehospice news for more information.
Information about plans for a new palliative care data collection in England
26 August 2015
Public Health England’s National End of Life Care Intelligence Network (NEoLCIN) has added information to its website about plans for a new data collection from specialist palliative care services in England. Specialist palliative care services are based in hospitals, hospices and in the community and typically consist of a team led by a consultant clinician specialising in palliative care.
The dataset includes information about patient outcomes, including patient and carer views on care. It will therefore help drive improvements in individual care and address inequalities. The data will also be used to support commissioning of specialist palliative care services in England.
If you would like to comment on the plans or give feedback, please contact neolcin at phe dot gov.uk link
Opportunity for hospices to be involved in a national project to improve data
26 August 2015
Public Health England wishes to recruit one or more hospices to take part in the Palliative Care Clinical Data Set pilot. This is to test the collection of a proposed new data set incorporating demographic, activity and outcomes-related information, with a view to improving outcomes and supporting a new model for commissioning of palliative care services in England.
They are seeking hospices which do not currently have an electronic record system. The purpose is to test a web-based data-set collection system, and to evaluate it for wider use for the planned full national collection. Participation will entail use of the web-based system to record current activity over a period of about 3 months, participation in ongoing project meetings and contributing to the pilot evaluation at the end of the financial year. For more information about the data set visit the website.
For more information or an informal discussion about participation, interested providers should contact Malcolm.roxburgh at phe dot gov.uk link
Notification of withdrawal of the ELCQuA tool 31 March 2016
26 August 2015
NEoLCIN has written to all registered users of ELCQuA (End of Life Care Quality Assessment tool) recently to advise of the withdrawal of the tool in March 2016.
The Network developed and launched ELCQuA in 2010 and has continued to host and maintain the tool and support users. The purpose of the tool is to support quality assessment of palliative and end of life care services and benchmarking.
From a survey conducted last year and a review of its usage it is apparent that ELCQuA is not meeting user needs. We have, therefore, decided to withdraw the tool from 31 March 2016. We will continue to work with colleagues in NHS England to consider ways of supporting quality monitoring and improvement. Please let us know if you have any suggestions.
For more information contact neolcin at phe dot gov.uk link
Royal College of Nursing: Getting it right every time
NHS Improving Quality has supported the Royal College of Nursing’s new online tool designed to offer support in delivery of appropriate end of life care alongside existing training, with a particular focus on nutrition and hydration.
Access the resource.
Quality of Life research funding call
3 August 2015
The Brain Tumour Charity have recently launched their Quality of Life research funding call. They are seeking applications and are happy to consider applications looking at end of life issues. The closing date for response is Monday 12 October 2015.
More information is available from their website.
NICE consults on draft guidance to help the NHS care for us in our last few days of life
29 July 2015
The National Institute for Health and Care Excellence (NICE) has today published a draft guideline to support the NHS in providing high quality and compassionate care for people who are dying. PHE welcomes this as an important adjunct to improving end of life care. The NICE guideline will help doctors and nurses identify when an individual is entering their final days of life and includes recommendations on the management of common symptoms, clear communication and medication prescribing.
For more information view the NICE press release.
Cancer Taskforce publishes Cancer Strategy
27 July 2015
Six strategic priorities have been recommended by the Independent Cancer Taskforce to help the NHS achieve world-class cancer outcomes:
- A radical upgrade in prevention and public health.
- A national ambition to achieve earlier diagnosis.
- Patient experience on a par with clinical effectiveness and safety.
- Transformation in support for people living with and beyond cancer.
- Investment to deliver a modern high-quality service.
- Overhauled processes for commissioning, accountability and provision.
Duncan Selbie, chief executive of Public Health England, said:
“Four in ten cancers are preventable and without concerted action on risk factors like smoking, alcohol and diet, cancer will spread even greater misery to those affected. The Cancer Taskforce rightly state that we need a radical upgrade in prevention and public health.
“PHE plays a critical role in the national response to cancer, including providing the data and intelligence on which the NHS depends, and we warmly welcome the Taskforce’s report. We look forward to considering the recommendations, especially the action plans to reducesmoking and tackle obesity, in detail, and working with our partners to realise the vision of a society that is serious about prevention.”
Download Achieving World-class Cancer Outcomes. A strategy for England 2015-2020.
Results of the 2014 National Survey of Bereaved People
10 July 2015
The Office for National Statistics (ONS) have published their 2014 report for the annual National Survey of Bereaved People (VOICES).
Visit the ONS website.
New end of life care profiles for clinical commissioning groups
6 July 2015
The National End of Life Care Intelligence Network (NEoLCIN) has updated the end of life care profiles for clinical commissioning groups (CCGs). The profiles have been updated with new data for 2011-2013 and draw together a wide range of information to give an overview of variations in cause and place of death, by age and sex, for each CCG in England.
For more information and to view the profiles, see End of life care profiles for CCGs
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.