Bereavement support

Nothing can prepare you for what you are experiencing if you have lost a loved one to primary immunodeficiency. Grief can last for years, not weeks or months. Its duration and how it affects you is different for everybody – because everyone is different.

Many people may benefit from reaching out to specialist bereavement support organisations to help them cope with their grief and/or the cost of funeral expenses. This page gives a directory of services that might be of help to you and your family.

Your GP

You may consider approaching your GP to request help. They will be able to discuss with you whether medication or psychological therapy will be of benefit. Many GPs are able to refer you to local counselling services for one-to-one support over a series of weeks.

Support from voluntary organisations

You may prefer to contact one of the voluntary organisations listed below which specialise in providing help for those who have been bereaved. They offer advice or a means of contacting others who have experienced bereavement, and the website for each provides information and links that may be useful.

Bereavement Advice Centre

The Bereavement Advice Centre is a free helpline and web-based information service. It gives practical information and advice on the many issues and procedures that are faced after the death of someone close. It takes calls from the bereaved and from the professionals and volunteers who support them.
Helpline: 0800 634 9494

Bereavement Trust

Translated bereavement helplines in Gujarati, Urdu, Mandarin and Cantonese.
Helpline: 0800 435 455

Cruse Bereavement Care

Cruse Bereavement Care promotes the well-being of bereaved people and enables anyone bereaved by death to understand their grief and cope with their loss. Services are free to bereaved people. The charity provides support and offers information, advice, education and training services. Calls to the helpline are free.
Helpline: 0808 808 1677 or helpline@cruse.org.uk

Cruse Bereavement Care Scotland

Cruse Bereavement Care Scotland provides bereavement support, either face to face or over the phone, from trained volunteers in Scotland. Calls to the helpline are chargeable.
Helpline: 0845 600 2227 or info@crusescotland.org.uk

Child Bereavement UK

Child Bereavement UK provides support, information and training to all those affected when a baby or child dies, or when a child is bereaved. It has an online forum for bereaved parents and a database of organisations that offer support to bereaved families and the professionals who care for them.
Helpline: 0800 02 888 40

Childhood Bereavement Network

The Childhood Bereavement Network aims to improve the quality and range of bereavement support for children, young people, their families and other care-givers. It provides information about support services.
Helpline: 020 7843 6309

Compassionate Friends

This charitable organisation of bereaved parents, siblings and grandparents is dedicated to the support and care of others who have suffered the death of a child or children. Compassionate Friends provides a helpline, local befrienders and online support.
Helpline: 0345 123 2304; Northern Ireland: 0288 77 88 016

Dying Matters

A source of information and support to those who’ve been bereaved, Dying Matters publishes a helpful leaflet called Being there.

Grief Encounter

Grief Encounter is a London-based organisation that helps families address difficult issues, such as the death of a child’s parent or significant loved one. It offers a helpline and support, such as one-to-one counselling and residential camps.
Helpline: 020 8371 8455

Hope Again

A website designed for young people by young people who have been bereaved (part of Cruse Bereavement Care).
Helpline: 0808 808 1677

Lifeline (Northern Ireland)

Lifeline is the Northern Ireland crisis response helpline service for people who are experiencing distress or despair.
Helpline: 0808 808 8000

Samaritans

Samaritans provides confidential, non-judgmental emotional support, 24 hours a day for people who are experiencing feelings of distress or despair, including those which could lead to suicide. Its services are offered by telephone, email, letter and face to face in most of its branches.
Helpline: 116 123

Sands (Stillbirth and neonatal death charity)

Sands is a voluntary organisation that offers support to parents if their baby dies during pregnancy or after birth. Many of its volunteers have been through this experience themselves, and help is offered not only to parents but also to other family members, especially other children and grandparents. The organisation offers telephone advice, a web forum, and has 90 local groups.
Helpline: 0808 164 3332

WAY Widowed and Young

An organisation for people aged 50 or under when their partner died, WAY has a support group, and its website has links to other relevant sites.

Winston’s Wish

Winston’s Wish is a childhood bereavement charity that offers services to bereaved children, young people and their families, as well as to anyone concerned about a grieving child. It has a helpline and provides residential weekends for children and young people.
Helpline: 08088 020 021

Financial support for funeral costs

Child Funeral Charity

This organisation offers financial support for families struggling to meet the cost of a child’s funeral. Applications need to be made before the funeral arrangements are finalised.
Helpline: 01480 276088

Turn2us

Turn2us is a free service that helps people in financial need to access benefits, charitable grants and other financial assistance.
Helpline: 0808 802 2000

Other useful websites

Bereavement Register

By registering with this free service, the name and address of the person who has died is removed from mailing lists, stopping most unwanted direct mail within six weeks.
Helplines: 020 7089 6403 or 0800 082 1230 (automated registration service)

Posted April 2019