2015 news

NICE publishes new guidelines on caring for adults at the end of their lives

21 December 2015

The National Institute for Health and Care Excellence (NICE) has launched the first guidelines for the NHS on improving care for people who are in their last days of life.

The guidelines aim to put the dying person at the heart of decisions about their care, so that they can be supported in their final days in accordance with their wishes.

Read the news item from NICE and download the guidelines.


Revised Transforming end of life care in acute hospitals: The route to success ‘how to’ guide launched

18 December 2015

This revised and updated version of the Transforming end of life care in acute hospitals: The route to success 'how to' guide, marks a significant milestone to improve the quality and experience of care at end of life for patients and their families. Commissioned by NHS England, the publication offers practical advice and support for frontline clinicians and leaders for the work required to transform end of life care in acute hospitals.

Find out more and download a copy of the guide.


More end of life care data/indicators available on PHE’s Fingertips

9 December 2015

New end of life care indicators are now available in Fingertips. Three new domains have been added namely:

Mortality - Directly Age Standardised Mortality Rate and percentage of deaths for age groups 0-65, 65-74,75-84, 85+.

Death in Usual Place of Residence (DiUPR) - Percentage of DiUPR for age groups 0-65, 65-74,75-84, 85+.

Relevant indicators from other profiles – A collection of some indicators from other published profiles that may be relevant to end of life care.

Information can be found on Fingertips.


Place of death statistics

9 December 2015

The statistics for the rolling year ending Q1 2015/16 have been published on the NEoLCIN website. The proportion of deaths in usual place of residence continues to increase - 45.7% of all deaths in England up from 45.1% for rolling year ending Q3 2014/15 (38% in 2008).

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.

For more information visit the Place of death web pages.


NICE publishes guideline on transition from hospitals to community care

9 December 2015

National Institute for Health and Care Excellence (NICE) has published its guideline on transition from inpatient hospital settings to community care for adults with social care needs.

This guideline covers the transition between inpatient hospital settings and community or care homes for adults with social care needs. It aims to improve people's experience of admission to, and discharge from, hospital by better coordination of health and social care services.

More information is available on the NICE website.


End of life care themed review launched

8 December 2015

The National Insititue for Health Research (NIHR) Dissemination Centre has launched its first themed review – a new independent report which compiles published and ongoing NIHR funded research into end of life care.

Better Endings brings together evidence from the NIHR, focusing largely on the quality and organisation of care. The review aims to help those delivering, planning or using end of life services to ensure that the right care is delivered in the right place at the right time.

The themed review aims to help NHS decision makers by presenting the findings of 17 NIHR studies in a clear and comprehensive way. It also highlights 12 pieces of ongoing NIHR funded research that are evaluating new and existing care initiatives, such as ‘hospice at home’ and a new data sharing service to improve continuity of care.

Better Endings is available to download on the NIHR Dissemination Centre website.


e-ELCA: Supporting Training in End of Life Care

12 November 2015

Health Education England's e-learning programme End of Life Care for All (e-ELCA) aims to enhance the training and education of the health and social care workforce so that well-informed high quality care can be delivered by confident and competent staff and volunteers to support people wherever they happen to be.

There are over 150 highly interactive sessions available.

visit the website.


Call for case studies of good practice in end of life care

6 November 2015

SCIE (Social Care Institute for Excellence) has issued a call for case studies of good practice in end of life care.

SCIE are looking to gather new ideas about how best to support people and their families at the end of life in a range of settings – in patients’ homes, care homes and in hospital.

Case studies should highlight what makes a service special, draw out innovative elements of the work and give readers ideas they might use in their own practice.

Submitted case studies will sit within SCIE’s end of life care hub, alongside other ‘ideas for practice’ and resources on end of life care.

If you are interesting in supporting this project by summiting a case study please contact Pamela at pamela.holmes at scie dot org.uk link


More data live in PHE Fingertips

4 November 2015

New end of life care indicators are now available in Fingertips

  • percentage of deaths for age groups 0-65, 65-74,75-84, 85+
  • percentage of Deaths in Usual Place of Residence (home plus care home) for age groups 0-65, 65-74,75-84, 85+

Indicators are reported by Government Office Region, Strategic Clinical Network (SCN), CCG, County and Unitary Authority (upper tier local authorities) and District and Unitary Authority (lower tier local authorities).

Information can be found on Fingertips.


Marie Curie’s annual grants programme for palliative and end of life care research opens

30 October 2015

Marie Curie has launched its largest-ever call for research, in partnership with the Scottish Government Chief Scientist Office (CSO) and the Motor Neurone Disease Association (MND Association).

The partnership is calling for applications that address research priorities identified in the Palliative and end of life care Priority Setting Partnership (PeolcPSP), which asked carers, health and social care professionals, and people with terminal illnesses to identify what they thought were the most pressing areas of focus for palliative and end of life care research.

For more information visit the Marie Curie website.


New resuscitation guidelines highlight importance of talking about end of life care

27 October 2015

Every five years the Resuscitation Council (UK) updates its resuscitation guidelines, based on the latest available science, and the new 2015 guidelines were published earlier this month.

The resuscitation guidelines contain detailed information about basic and advanced life support for adults, paediatrics and the newborn. Also included are guidelines for the use of automated external defibrillators and other related topics.

The 2015 resuscitation guidelines can be downloaded from the Resuscitation Council (UK) website.


New publication for commissioners on enabling people to stay out of hospital at the end of life

27 October 2015

The National Council for Palliative Care (NCPC) has published a new report on enabling people to stay out of hospital at the end of life. Getting serious about prevention: enabling people to stay out of hospital at the end of life, warns that the NHS is paying too much to care for people approaching the end of life in hospitals, where they often do not want or need to be. The report makes a number of recommendations for commissioners, service providers and health and social care staff.

The report can be accessed on the NCPC’s website – where hard copies can be also purchased.


State of Care 2014/15

27 October 2015

The Care Quality Commission (CQC) have produced a new report, State of Care. This annual report draws on findings from their new, more through inspections across all of the sectors they regulate. They are starting to build a comprehensive picture of quality across England and identify the elements that drive high-quality care.

Download State of Care from the CQC website.


New report: Developing data and intelligence for end of life care

22 October 2015

Between September 2014 and March 2015, PHE’s NEoLCIN team held one-day workshops with nine of the strategic clinical networks (SCNs) that took up our offer of a consultation event. The workshops were an opportunity to learn from one another and build understanding about how best to improve end of life care data and intelligence and provided a platform for local and national leadership on relevant issues.

This report summarises the priorities for future improvements to end of life care data and intelligence that were identified by over 700 participants across nine SCNs.

Download the report – Developing data and intelligence for end of life care


Most hospices are ‘Good’ or better, says CQC

12 October 2015

According to new data from the Care Quality Commission (CQC), hospices in England are caring for and supporting people in a compassionate way at the end of their lives. The regulator’s latest ratings data shows that over 90% (34 out of 37 hospices) inspected so far have been judged to be providing Outstanding or Good care.

View the press release on CQC’s website.


End of life care profiles on fingertips

9 October 2016

End of life care indicators are now live on PHE fingertips. The new End of Life Care Profiles aim to improve availability and accessibility of information around end of life care. The profiles provide a snapshot overview for each Government Office Region, Strategic Clinical Network, clinical commissioning group and upper and lower tier local authorities. They are intended to help local government and health services improve care at the end of life, and provide comparative information on place of death by age. The profiles include detailed analysis of mortality data by Underlying Cause of Death and Place of Death and include trend data 2004-2013. The National End of Life Care Intelligence Network (NEoLCIN) will be adding new indicators to these profiles over the coming months.


UK is the best place in the world to die, according to end-of-life care index

9 October 2015

The UK ranks first in the 2015 Quality of Death Index, a measure of the quality of palliative care in 80 countries around the world released today by The Economist Intelligence Unit (EIU).

Its ranking is due to comprehensive national policies, the extensive integration of palliative care into the National Health Service, a strong hospice movement, and deep community engagement on the issue. The UK also came top in the first Quality of Death Index, produced in 2010.

The Quality of Death Index, commissioned by the Lien Foundation, a Singaporean philanthropic organisation, is based on extensive research and interviews with over 120 palliative care experts from across the world.

For more information visit www.qualityofdeath.org or read the press release.


Updated guide provides people affected by suicide with both emotional and practical support

2 October 2015

People who have been bereaved by suicide have used their experiences to lead the revision of a support guide to help others affected by someone taking their own life.

Help is at Hand provides people affected by suicide with both emotional and practical support. The most recent official figures reveal 6,233 suicides of people aged 15 and over were registered in the UK in 2013 and suicide has far-reaching effects among friends, family, colleagues, and the wider community. Those bereaved by a suicide are at increased risk of mental health and emotional problems and may be at higher risk of suicide themselves, so receiving the right support is essential.

For the first time, individuals who have been bereaved by suicide have been the principal authors of the guide, with support from experts at Public Health England (PHE) and the National Suicide Prevention Alliance (NSPA). By giving editorial control to individuals with experience of bereavement for the first time it is hoped the updated ‘Help is at Hand’ will provide more relevant and personal guidance to others in this traumatic situation.


 

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.

Download the report – Palliative Care Co-ordination:core content Consultation Report.


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:

  England Lowest CCG Highest CCG
Home 22.4% 16.7% 31.1%
Care Home 23.2% 6.0% 34.1%
Hospital 47.2% 36.7% 68.3%
Hospice 5.8% 0.3% 11.8%

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.

Changes include:

  1. Change of title of the information standard – from End of Life Care Co-ordination: core content to Palliative Care Co-ordination: core content
  2. Coding updates for disability, functional status, carer and care workers and carer awareness of prognosis
  3. New data items for likely prognosis, awareness of cardiopulmonary resuscitation decision
  4. NHS number is now mandatory for collection
  5. Amendment to some data items including formal and informal carers, Do Not Attempt Cardiopulmonary Resuscitation decisions, preferred and actual place of death
  6. Guidance documents have been updated, including amendments for the consent model

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.

Also published:

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:

  1. Each person is seen as an individual
  2. Each person gets fair access to care
  3. Maximising comfort and wellbeing
  4. Care is coordinated
  5. All staff are prepared to care
  6. 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 wensite.

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:

  1. A radical upgrade in prevention and public health.
  2. A national ambition to achieve earlier diagnosis.
  3. Patient experience on a par with clinical effectiveness and safety.
  4. Transformation in support for people living with and beyond cancer.
  5. Investment to deliver a modern high-quality service.
  6. 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.


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

 

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