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What is End of life care?

Some of the basic information you need to know about End of Life care. It is written for the lay person and informative for people approaching the end of their life.

Department of Health:

This web link gives you access to the Department of Health home page. It is a comprehensive site and explains how the Government works across other departments as well. You can access all the publications and also the consultations the government is working.

Website for the National Institute for Clinical Excellence (NICE) and provides guidance on quality standards in health care. This covers a wide range of conditions, including Palliative and end of life care.

Cancer Research UK:

Information from the organisation Cancer Research UK and all its activities.

The Dying Matters Alliance

Created following the publication of the End of Life Care Strategy with a specific remit to try and encourage people to talk more openly about death and dying. The alliance has many activities nationwide that they do to engage more and more people to talk about this sensitive topic.

Healthtalk

Rich with stories from different people talking about the death and dying experiences. Some of the stories concern the individuals themselves, or someone they cared for. Comedian Dawn French gives a 3 minute introduction to this web link and what the video clips aim to achieve and help others find comfort in listening to such stories.

Coping with Advanced Cancer:

Information about coping with cancer that has come back after treatment. The web site was developed by Macmillan Cancer Support one of the largest charities in the UK that supports people with cancer.

Marie Curie Cancer care 

A charity based in the UK that cares for people who are at the end of their lives. The website gives more information about how Marie Curie cancer care support people who are dying.

Palliativedrugs.com 

A website that provides information about drugs used to manage symptoms in palliative and end of life care. It includes unauthorised indications and routes of administration, and details about the administration of multiple drugs by continuous subcutaneous infusion.

(WHO) Global Atlas of Palliative Care 

This website gives a Global Atlas of Palliative Care at the End of Life for both adults and children. It highlights the need for providing palliative care across the world so that every patient and those important to them can receive palliative care as a baseline for acceptable minimum care. Such care will ensure death is dignified.

The Global Atlas describes the need for palliative care at all levels of care. Palliative care is not limited to specialist palliative care services but includes primary and secondary level care. Palliative care is provided at three different levels: i) through a ‘palliative care approach’ adopted by all healthcare professionals, provided they are educated and skilled through appropriate training ii) ‘general palliative care’ provided by primary care professionals and those treating patients with life-threatening diseases, with a good basic knowledge of palliative care, and iii) ‘specialist palliative care’ provided by specialised teams for patients with complex problems

Funeral Poverty

There is increasing attention being drawn to the plight of people who The Guardian says are “Too poor to die”. They present an interesting article of funeral poverty and the impact this has on people. View this article at:

http://www.theguardian.com/commentisfree/2015/jun/09/poor-die-funeral-poverty-costs-uk

The Guardian highlights the Quaker Social Action on Poverty Fair Funerals campaign which aims to:
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Educate people about their choices so they can avoid funeral poverty
Influence government to do more for people in funeral poverty
Work with the funeral industry to do more for people on low incomes

They recently launched a Fair Funerals Pledge, encouraging individuals and groups who care about funeral poverty issues to ask their local funeral directors to provide clear prices and a more affordable funeral package for people who are struggling. You can find out more on this here:

https://www.quakersocialaction.org.uk/fair-funerals-pledge

An academic team at The University of Bath investigated in 2011 these concerns about the cost and funding of funerals and present some interesting information and the issues of funeral poverty on policy. You can read more on this at:

http://www.bath.ac.uk/ipr/our-publications/policy-briefs/funeral-poverty.html

End of Life Care Guidance

The RCN has published “Getting it right every time; fundamentals of nursing care at the end of life”. The guidance is designed for all nursing staff including healthcare assistants in all settings caring for people in the last year of life and those who are important to them. It highlights what is important when caring for a person approaching the end of their life. It will be invaluable to nurses who care for people at the end of life.

This publication follows the survey and project we alerted you to in the last newsletter. You can find the guidance at: http://http://www.rcn.org.uk/__data/assets/pdf_file/0011/629858/End-of-Life_RCN.pdf

The National Palliative and End of Life Care Partnership. On this site you will find the Ambitions for Palliative and End of Life Care: A national framework for local action 2015-2020. We have also created a downloadable slide-deck that presents the Partnership and the ambitions in an easy to use pdf format.

NCPC’s Care to Learn training programme was first launched five years ago and has been a popular resource for training people who are new to the sector. Following significant recent changes within palliative and end of life care and in response to feedback from those who have used Care To Learn, the programme has been subject to a thorough process of revision and updates. The format has also been changed so that it is now presented in two A4 booklets - one for students and one for mentors.

Care To Learn is designed to help staff improve end of life care. It provides an introduction to good practice, and is flexible so that it can be tailored to each individual learner, organisation or locality.

It is aimed at Health Care Assistants and direct care staff across all settings including hospitals, hospices, care homes, the individual’s home or in housing schemes. Qualified nursing staff moving into end of life care for the first time will also benefit from using the programme.

This is a great resource for everyone requiring training around end of life. Order here by the end of January to receive a 10% discount. Remember – current subscribers also receive their 50% discount.
For more information about our publications go to shop. If you need information about your membership status or if you want to subscribe email enquiries@ncpc.org.uk and we will be pleased to help you.

Public Health England published ‘Faith at end of life: public health approach resource for professionals’. This publication explains the importance of faith at the end of life, for professionals, providers and commissioners working in communities and can be accessed here:

NICE (National Institute for Health and Care Excellence) Care of dying adults in the last days of life.

This guideline covers the clinical care of adults (18 years and over) who are dying during the last 2 to 3 days of life. It aims to improve end of life care for people in their last days of life by communicating respectfully and involving them, and the people important to them, in decisions and by maintaining their comfort and dignity. The guideline covers how to manage common symptoms without causing unacceptable side effects and maintain hydration in the last days of life.