The Bereavement Pathway

 

The 'Bereavement Pathway' is grouped in order from the time of diagnosis of a life-threatening condition (left) to the time after someone has died (right).

To access the information and links, please click on the entries to open a new information box.

Web Design by RNS Publications 
Verification of death Family Given Information

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Support groups/ Specialist groups

Some organisations run support groups where groups of bereaved people meet for mutual support. Some of these are 'open', meaning that people can join or leave at any time; others are 'closed' meaning that the group is planned around a set number of sessions and the same group starts and ends together. Some have a trained 'facilitator' or leader and others may be peer led and supported.

Cruse offers bereavement support both face-to-face and in groups.

WAY Widowed and Young offers support and friendship to those who have been widowed under the age of 50.

The Compassionate Friends (TCF) operates local support groups for those who have lost a child (of any age)

Survivors of Bereavement by Suicide (SOBS) operates local support groups for those who have been bereaved through suicide

Winston's Wish, Child Bereavement UK and other local child bereavement organisations provide groups for children, young people and their families who have been bereaved by suicide; for those bereaved through murder or manslaughter and for those bereaved through the death of a member of the armed forces.

Also, increasingly, people are finding support through online 'groups' and/or on message boards and web forums.

 



Web links

www.cruse.org.uk

www.wayfoundation.org.uk

www.tcf.org.uk

www.uk-sobs.org.uk

www.winstonswish.org.uk

www.childbereavement.org.uk

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FOR PROFESSIONALS

 



Web links

Care of a family when their baby or child dies in the Neonatal, Paediatric or the Accident and Emergency Units

Care of a family when their baby dies in a maternity unit

Taking a baby home after death

Taking photographs following the death of a baby

When an adult is dying or has died: considering children

Breaking bad news to children: information for staff

Talking to children when a baby dies

Involving children when a parent is not expected to live

Involving children when a parent is on ITU and not expected to live

Supporting children after a frightening event

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Access to bereavement services in the community

After a death, family and friends should be offered information about community bereavement services. In some cases, people may be reluctant to ask for help and it can be helpful to have contact established automatically by those who have offered support around the time of the death.

Community bereavement services may be offered by:

 



Web links

www.helpthehospices.org.uk

www.togetherforshortlives.org.uk

www.cruse.org.uk

www.childhoodbereavementnetwork.org.uk/ukdirectory.htm

www.childbereavement.org.uk

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National End of Life Care

In medicine, nursing and the allied health professions, end-of-life care refers to health care, not only of patients in the final hours or days of their lives, but more broadly care of all those with a life-threatening or terminal illness or terminal condition that has become advanced, progressive and incurable. The term can sometimes also be used for the last care of someone who has died suddenly.

End of Life Care Strategy

The End of Life Care Strategy, published by the Department of Health in 2008, identified a number of significant issues affecting dying and death in England:

The strategy promotes high quality care for all adults at the end of life in England by providing people with more choice about where they would like to live and die. Similar strategies for the end of life have also been developed in Wales, Scotland and Northern Ireland.

Each year, just over half a million people died in England, about 99% of them adults over the age of 18, and almost two-thirds adults over the age of 75. About three-quarters of deaths could be considered "predictable" or expected and follow a period of chronic illness – for example heart disease, cancer, stroke or dementia. In all, around 58% of deaths occurred in an NHS hospital, 18% at home, 17% in residential care homes (most commonly for people over the age of 85), and about 4% in hospices. However a majority of people would prefer to die at home or in a hospice, and according to one survey less than 5% would rather die in hospital. A key aim of the strategy therefore is to reduce the needs for dying patients to have to go to hospital and/or to have to stay there; and to improve provision for support and palliative care in the community to make this possible. One study estimated that 40% of the patients who had died in hospital had not had medical needs which required them to be there.

 



Web links

www.dying matters.org

www.ncpc.org.uk

www.endoflifecare-intelligence.org.uk

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Step One: Discussions as the end of life approaches

The steps one to six are part of End of Life Care Planning and are followed in staff training.

Staff and volunteers should feel able to talk openly and honestly with people at the end of life and with their family and friends: this will include being able to recognise and use triggers for these discussions.

See details of core skills in the document.

www.skillsforcare.org.uk/Document-library/Skills/End-of-life-care/NationalendoflifequalificationsandSixStepsprogramme.pdf

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Step Two: Assessment, care planning and review

Those involved in offering support should be able to hold conversations about advance planning for end of life care with patients and their families, demonstrating understanding of the various factors and influences that can affect an individual's end of life choices. This will also involve helping a person complete an Advance Care Plan which is regularly reviewed.

See details of core skills in the document.

www.skillsforcare.org.uk/Document-library/Skills/End-of-life-care/NationalendoflifequalificationsandSixStepsprogramme.pdf

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Step Three: Co-ordination of care

All staff and volunteers should be aware of and use the additional resources of the community and voluntary sector to provide people at the end of life and their families, friends and carers with co-ordinated support.

See details of core skills in the document.

www.skillsforcare.org.uk/Document-library/Skills/End-of-life-care/NationalendoflifequalificationsandSixStepsprogramme.pdf

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Step Five: Care in the last few days of life

All staff and volunteers in whatever setting (hospital, hospice, home) should be aware of the appropriate care for people in their last days and hours and deliver this care with sensitivity and respect.

See details of core skills in the document.

www.skillsforcare.org.uk/Document-library/Skills/End-of-life-care/NationalendoflifequalificationsandSixStepsprogramme.pdf

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Step Four: Delivery of high quality services in different settings

All staff and volunteers in whatever setting (hospital, hospice, home) should deliver consistently high-quality care to people at the end of life and their families, friends and carers.

See details of core skills in the document.

www.skillsforcare.org.uk/Document-library/Skills/End-of-life-care/NationalendoflifequalificationsandSixStepsprogramme.pdf

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Deterioration/ Expected death

Medical and nursing staff will usually know when the final stages are approaching. Physical signs of deterioration will be noted and the person's care adjusted to fit these conditions.

This will be a time when it is important to check if the person has expressed specific wishes about what they do and do not want to receive in treatment in the last stages of their life. (see Advance Care Planning). It is also the time to consider the level of pain control.

This is also the time for family and friends to be informed (if not already) in clear language that death is imminent. It is important that children and young people are included in this sharing of information. Families appreciate hearing this news from someone who has already been involved with their relative's care.

The person who is deteriorating will have emotional needs which need attention as well as physical ones; they may be afraid, have regrets and needs – or they may experience a sense of calm and readiness.

 



Web links

www.dyingmatters.org/page/talking-about-death-and-dying-0

www.gmc-uk.org/guidance/ethical_guidance/end_of_life_contents.asp

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Discussions and conversations

All staff and volunteers who work with people with life-threatening conditions and/or within emergency departments should receive training in talking confidently and clearly with patients and their families and friends.

At the basis of high quality care for patients and their families is the need for communication: between patients and their medical teams; between families and those caring for the deceased person (whether over a period of time if the death is expected or under the pressure of explaining a sudden death); within families; between families and the services that offer support after a death.

Guidance on how to communicate with the dying, their families and the bereaved can be found within the links under 'education' and 'training'.

Key principles include:-

The website 'Breaking Bad News' is designed to help communication with people with intellectual impairment; however its tips and guidance are useful in any situation.

The person who is dying may want to talk about what is happening but be unsure whether their family can cope with the truth. Their family and friends may want to talk but do not want to distress the person who is dying. This can develop into a 'protection racket' with both sides wanting to discuss the situation and neither daring to start. For help with starting these conversations, please see the links below.

 



Web links

www.dyingmatters.org/page/TalkingAboutDeathDying

www.macmillan.org.uk

www.winstonswish.org.uk/mainsection.asp?section=000100010002&pagetitle=Parents%2FCarers

www.breakingbadnews.org

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Sudden Death

Around a quarter of all deaths in the UK are sudden or unexpected. Causes include: heart attacks, brain haemorrhages, accidents (including road traffic incidents), suicide, murder and manslaughter. In addition, many people with chronic and life-threatening conditions may die 'suddenly' even if their death has been predicted.

A sudden death brings severe shock and distress to family and friends yet is often experienced within a busy A&E or other unfamiliar situation. These circumstances make it simultaneously more difficult for staff to provide appropriate space, time, quiet and understanding and even more important for these needs to be met.

The provision of bereavement support from bereavement service personnel within the hospital should be rapidly arranged. Some voluntary organisations provide support for those who have been bereaved suddenly.

Ideally, all hospitals should have facilities where family and friends can be with the person who has died suddenly, away from other distractions.

When death has been through violence or accident, there may also be police involvement, even within A&E. This can be disconcerting, at the least, to families and staff can play a role in encouraging a subtle presence.

 



Web links

www.cruse.org.uk

www.brake.org.uk

www.winstonswish.org.uk

www.inquest.org.uk

www.uk-sobs.org.uk

www.samm.org.uk

www.bsauk.org

www.childbereavement.org.uk

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Sudden Death

 



Web links

National Association of funeral directors: www.nafd.org.uk

Ministry of justice: www.justice.gov.uk

Department of health end of life care: www.dh.gov.uk

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Specialist nurses and visitors

There are several kinds of specialist nurses who can support people who are dying at home. These may be provided by:-

 



Web links

www.nahh.org.uk/about-hospice-care

www.mariecurie.org.uk/en-GB/nurses-hospices/nursing-in-your-home/get-a-marie-curie-nurse

www.macmillan.org.uk/HowWeCanHelp/Nurses

www.helpthehospices.org.uk/about-hospice-care/find-a-hospice/uk-hospice-and-palliative-care-services

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Conversations with Consultants/ Registrars

Wherever the person is dying, it is important for them and for their families to continue to have access to their consultant (or the nominated registrar).

As a person nears death, it continues to be important for the consultant to communicate clearly with the family and to have overall responsibility for ensuring that the patient's wishes are balanced with what will provide them with the greatest comfort.

 



Web links

www.gmc-uk.org/guidance/ethical_guidance/end_of_life_contents.asp

www.breakingbadnews.org

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Information

There is a wealth of information on the web to support decisions at the end of life. Please see specific links elsewhere on this pathway.

 



Web links

www.gmc-uk.org/guidance/ethical_guidance/end_of_life_contents.asp

www.dyingmatters.org

www.finalfling.com

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Cultural and religious requirements

It important that all services and individuals providing support both before the end of life and after bereavement, have sensitivity and insight to cultural and religious requirements. Information on different faith practices around a death and in mourning should be familiar to staff and volunteers and/or easy to access on demand.

It is also important to remember that there is a wide difference of beliefs and practice within faiths and cultures – and within families. It is always appropriate gently to ask what forms of care would be appreciated and when.

Those providing care after a death need to be aware of traditions associated with the treatment and disposal of the body of the deceased person and the likely difficulties for some cultures if, for example, a post-mortem and/or inquest is required and the funeral delayed.

The Multi-faith Group for Health Care Chaplaincy has resources and information on its website.

Health care chaplains within the NHS can access faith-appropriate support (including secular/humanist support) for patients and their families.

It is also important to remember that there are many types of culture, not all of which are based around belief or ethnicity. For further reading on this:

Death and Bereavement across Cultures: Murray Parkes C. (editor); Routledge; 1996

On Bereavement: Culture and Grief : Walter T.; Open University Press; 1999

 



Web links

www.mfghc.com/resources/resources_faithindex.htm

www.nhs-chaplaincy-spiritualcare.org.uk

www.healthcarechaplains.org

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Organ donation

 



Web links

Nhsbt organ donation: www.organ donation.nhs.uk

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Last Offices

The last offices are the procedures performed usually, in the developed world, by a nurse, to a dead person shortly after death has been confirmed. They can vary from hospital to hospital, and culture to culture. It is important that, wherever possible, a person's faith and cultural practices are followed. The need for post mortem examination may make it impossible to carry these out.

Last offices should be performed when family and friends choose, whenever possible. They may wish to spend time with their relative's body after death before any practical care takes place.

Each hospital or hospice will have guidance on Last Offices. The procedure typically includes the following steps, though they can vary according to an institution's preferred practices.:

 



Web links

www.nhsiq.nhs.uk/media/2426968/care_after_death___guidance.pdf

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Verification of death

All deaths must be confirmed or verified by a suitably trained person. This is usually a doctor or a nurse who has undergone appropriate training. The purpose of verification is to confirm that the person has died. The person carrying out the verification may not be able to issue the Medical Certificate of Cause of Death (Death Certificate).

Certification can only be carried out by a registered medical practitioner (that is, a doctor) who looked after the patient during their last illness.

The Academy of Medical Royal Colleges has a comprehensive code of practice for the diagnosis and confirmation of death.

 



Web links

www.aomrc.org.uk/publications/statements/doc_view/42-a-code-of-practice-for-the-diagnosis-and-confirmation-of-death.html

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Physical care of the deceased patient

The body of the deceased person should be cared for in a dignified and culturally sensitive way. Some cultures and faiths have requirements for how the body should be treated which should be followed wherever possible. The deceased was once a unique, living person and should continue to be treated with respect and dignity. The NHS Improving Quality website carries comprehensive guidance around the time of death.

It is important to remember and be sensitive to the needs of family and friends – there is no great rush, for example, to clean or move the body. Equally, it may make staying with a loved one's body easier if it has been cleaned and prepared for viewing.

It may be easier to take time caring for the deceased patient if they have died at home, in a hospice or nursing home; hospitals may have pressure on bed spaces, however sensitive staff wish to be to meet the needs of families and friends.

Family and friends may appreciate helping to clean, arrange and dress the body after death.

 



Web links

www.nhsiq.nhs.uk/media/2426968/care_after_death___guidance.pdf

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Family given information

Immediately after a death, especially when a death has been sudden, families may struggle to remember information. It is therefore important to provide this in several formats, both verbally and in written form, with options to website information.

Information provided can be of two types: that relating to practical tasks and that relating to where to access emotional support after a death. Equally, there should be information about what has happened, what tasks next need to be carried out and where further support can be accessed.

There are also many people who will need to be informed of the death. You can find more information about letting people know in this section.

 



Web links

www.cruse.org.uk/when-someone-dies

www.gov.uk/after-a-death

www.bereavementadvice.org/what-to-do-when-someone-dies--a-practical-guide-download-or-read-on-screen-april-2013-edition/what-to-do-when-someone-dies-a-practical-guide.php

www.adviceguide.org.uk/england/relationships_e/relationships_death_and_wills_e/what_to_do_after_a_death.htm

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Registration of Death

One of the first things that need to happen when someone has died is for the death to be registered. This process will depend on the location and nature of the death. To do this, a Medical Cause of Death Certificate needs to be produced; deaths almost always need to be registered in person.

The death must be registered by the registrar:

In England and Wales, it is possible to delay registration for a further 9 days provided that the registrar receives written confirmation that the medical cause of death certificate has been signed by a doctor.

The registration should be made in the district in which the death occurred (unless the death has occurred in a county that has adopted a county-wide system). If this is not possible, the death can be registered elsewhere through a process of 'declaration' – in this case, there is a delay before the Death Certificate is issued. In Scotland the registration may be done at any Scottish registration office.

Registrars may operate appointment systems. Some operate an emergency out of office hours service for families needing an urgent funeral for any reason (such as faith requirements).

In general, registration of the death should be carried out before the funeral can go ahead. Exceptions are deaths subject to investigation by the coroner or procurator fiscal. Permission for burial may also be issued before full registration in certain circumstances but this is not possible if cremation is planned.

Tell Us Once is a service offered by most register offices, by phone and on-line (with the reference number given by the local registrar when the death is registered) which helps with the practical tasks following bereavement by taking on the role of informing any government department with which the deceased had dealings before their death. The service allows the bereaved person to inform central and local government services of the death at one time rather than having to write, telephone or even attend each service individually.

 



Web links

www.gov.uk/register-a-death

www.nhs.uk/CarersDirect/guide/bereavement/Pages/Registeringadeath.aspx

www.gov.uk/tell-us-once

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Medical Certificate of Cause of Death

A Medical Certificate of Cause of Death (usually simply called the 'Death Certificate') is a legal form issued by a medical practitioner who was involved in the care of the person during their last illness. Normally, the doctor will have seen the patient in the 14 days before the death occurred. The certificate records the medical diseases or conditions that led to the person's death and is required to enable the registration of the death to be carried out (except in cases where the Coroner arranges for a post mortem examination and/or inquest).

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Cremation Forms

Where a cremation is to take place, additional medical documentation is required. These are referred to as the Medical Certificate (Form CR4), the Confirmatory Medical Certificate (Form CR5) and the Authorisation to Cremate Certificate (Form CR10). Form CR4 is often issued by the same doctor who completed the Medical Certificate of Cause of Death, but can be issued by another doctor who also cared for the patient during their last illness and has also examined the body after death.

Form CR5 is completed by a doctor independent of the treating doctors, who will need to discuss the circumstances of the death with the treating doctor and another person (often a nurse who cared for the patient or a member of the patient's close family). The final certificate, Form CR10 is completed by a third doctor, employed by the crematorium, who scrutinises all of the cremation paperwork before allowing the cremation to take place.

The current system for death certification and scrutiny will be changing, with a new role of Medical Examiner introduced. The reforms are explained on the gov.uk website (see link below).

 



Web links

www.gov.uk/government/uploads/system/uploads/attachment_data/file/212950/Death-Certification-Reforms-Update-for-Coroners-Oct-12.pdf

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Codes of Conduct

Professional associations and bodies have their own codes of conduct which underpin service provision to ensure it is of high quality, safe, fair and reflective. Contact the appropriate association, a few of which are listed below, for their codes of conduct in end of life care and bereavement support.

 



Web links

General Medical Council : www.gmc-uk.org

Nursing and Midwifery Council : www.nmc-uk.org/Publications/Standards

Standards in Bereavement Care Services : www.cruse.org.uk/gold-standards

Bereavement Services Association : www.bsauk.org

Childhood Bereavement Network : www.childhoodbereavementnetwork.org.uk/policyPractice_guidelines.htm

National Association of Funeral Directors : www.nafd.org.uk/funeral-advice/about-us/code-of-practice.aspx

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Communication

At the basis of high quality care for patients and their families, is the need for communication: between patients and their medical teams; between families and those caring for the deceased person (whether over a period of time if the death is expected or under the pressure of explaining a sudden death); between families and the services that offer support after a death.

Guidance on how to communicate with the dying, their families and bereaved people can be found within the links under 'education' and 'training'.

Key principles include:-

The website 'Breaking Bad News' is designed to help communication with people with intellectual impairment; however its tips and guidance are useful in any situation.

The person who is dying may want to talk about what is happening but be unsure whether their family can cope with the truth. Their family and friends may want to talk but do not want to distress the person who is dying. This can develop into a 'protection racket' with both sides wanting to discuss the situation and neither daring to start. For help with starting these conversations, please see the links below.

 



Web links

www.dyingmatters.org

www.breakingbadnews.org

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Discussions, assessment and planning

The core of high quality care for the dying and for bereaved people is in responding to each individual and providing a service for that person and their circle of friends and family. This, of course, also needs to fit within the overall framework for the service provided.

To do this requires discussion and 'assessment' of what each person needs – physically, practically and emotionally. A starting point is to explore what is happening for this particular family at this particular time. What other events and challenges are adding pressure? What is their usual way of handling difficulties – to talk about it or to hide it away – as a family and as individuals? What support would each individual most benefit from receiving? How resilient are they usually? How supportive is their community?

Winston's Wish produce a guide to conducting assessments of a child's family after the death of a parent or sibling which can be easily adapted by services to other situations

 



Web links

www.cruse.org.uk/gold-standards

www.winstonswish.org.uk

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Co-ordinated and integrated care

The core of higAll those involved in the care of the patient before, at and after death, and in the care of their family and friends will be keen to co-ordinate and integrate their care in order to provide seamless support. This means that communication across teams and between statutory and voluntary sector providers in a locality is vitally important to good care of the patient and their family.

Ensuring regular meetings between local providers is one way to make sure this communication is happening.

After an unexpected death, it is important that family and friends are introduced in timely and thoughtful ways to the services that exist to support them.

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Support for staff

Being alongside people's grief can lead to emotional strain, deep questioning and sometimes distress. Organisations offering support to those at the end of life and their families need to ensure that all staff and volunteers receive regular, focused support. The provision and acceptance of this support make it possible to offer better support to others. Making it an automatic part of service delivery ensures that people do not avoid receiving the support they need and deserve. All service quality markers will include provision of support and supervision to staff and volunteers.

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Codes of Conduct

Professional associations and bodies have their own codes of conduct which underpin service provision to ensure it is of high quality, safe, fair and reflective. Contact the appropriate association, a few of which are listed below, for their codes of conduct in end of life care and bereavement support.

 



Web links

General Medical Council : www.gmc-uk.org

Nursing and Midwifery Council : www.nmc-uk.org/Publications/Standards

Standards in Bereavement Care Services : www.cruse.org.uk/gold-standards

Bereavement Services Association : www.bsauk.org

Childhood Bereavement Network : www.childhoodbereavementnetwork.org.uk/policyPractice_guidelines.htm

National Association of Funeral Directors : www.nafd.org.uk/funeral-advice/about-us/code-of-practice.aspx

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Supervision

It is important for those supporting the bereaved in a professional capacity to have supervision to ensure that the help they are providing to those who are bereaved is of the highest possible quality. Anyone involved professionally (whether in a paid or unpaid role) should receive supervision from someone with the appropriate training; try contacting the appropriate professional body if this isn't currently on offer.

Research about the importance of supervision in counselling and therapeutic situations is available online.

 



Web links

www.bacp.co.uk/research/Systematic_Reviews_and_Publications/Supervision.php

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Supervision

Professional bodies (for example, Royal College of Physicians, palliative care teams) will provide training for staff in how to support for patients and families (including children) both before and after a death. Contact the appropriate body for more details.

There is a package on online e-learning resources for those involved in delivery end of life care, with some modules open of access for volunteers.

Education and training for members of community groups, including schools is provided by many bereavement organisations. Cruse Bereavement Care can provide bespoke training as well as a range of bereavement awareness courses.

Education and training for those who support children and young people facing the expected death of a parent or sibling and those who have been bereaved. A list of courses is available on the Childhood Bereavement Network website or contact local services through the CBN online directory. Training courses are also listed on the websites of Child Bereavement UK and Winston's Wish.

 



Web links

www.e-lfh.org.uk/projects/end-of-life-care

www.cruse.org.uk/training

www.childhoodbereavementnetwork.org.uk/SubscriberEventsJanuary2014.htm

www.childhoodbereavementnetwork.org.uk/ukdirectory.htm

www.childbereavement.org.uk

www.winstonswish.org.uk

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Training

Professional bodies (for example, Royal College of Physicians, palliative care teams) will provide training for staff in how to support for patients and families (including children) both before and after a death. Contact the appropriate body for more details.

There is a package on online e-learning resources for those involved in delivery end of life care, with some modules open of access for volunteers.

Education and training for members of community groups, including schools is provided by many bereavement organisations. Cruse Bereavement Care can provide bespoke training as well as a range of bereavement awareness courses.

Education and training for those who support children and young people facing the expected death of a parent or sibling and those who have been bereaved. A list of courses is available on the Childhood Bereavement Network website or contact local services through the CBN online directory. Training courses are also listed on the websites of Child Bereavement UK and Winston's Wish.

 



Web links

www.e-lfh.org.uk/projects/end-of-life-care

www.helpthehospices.org.uk/our-services/international/resources/developing-services/education-and-training/

www.cruse.org.uk/training

www.childhoodbereavementnetwork.org.uk/SubscriberEventsJanuary2014.htm

www.childhoodbereavementnetwork.org.uk/ukdirectory.htm

www.childbereavement.org.uk

www.winstonswish.org.uk

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Medication & Equipment

If it is possible for a person to receive end-of-life care in their own home, it is usually necessary to also provide specialised equipment, such as adapted beds and oxygen. These will be arranged by the hospital or hospice providing the overall care in conjunction with the home care team.

It can sometimes seem abrupt for the equipment to disappear soon after a person has died, but such equipment is always in demand for other patients.