Helpful organisations: Bereavement
Grief can take many forms, and everyone’s experience is different. Within our inherited metabolic disorder community, families may face pregnancy and baby loss, the death of a child, the loss of a sibling or partner, or the death of someone after a long or complex illness. At such times, finding the right support can feel overwhelming.
On this page, we have brought together organisations offering specialist bereavement support across a wide range of needs. These include services for parents and carers affected by pregnancy and baby loss, support for children and young people, peer networks for siblings and young widows, faith based support, and helplines available around the clock. Many also provide practical guidance, local signposting and online communities.
We hope this collection helps you find understanding, compassion and support in a way that feels right for you. Please take a moment to explore the organisations listed below and reach out whenever you feel ready.
Aching Arms
[Pregnancy/Baby Loss/Parents/Carers]
Aching Arms supports parents and siblings through the devastating experience of pregnancy and baby loss. They offer a support service via phone and/or email as well as giving comfort bears to organisations supporting families, and to families who request one.
Website: https://achingarms.co.uk/
Phone: 07464508994
Email: support@achingarms.co.uk
ARC (Antenatal Results and Choices)
[Pregnancy/Baby Loss/Parents/Carers]
The parent’s forum is available only for people who have lost a baby and/or ended a pregnancy following a prenatal diagnosis. It is password-protected and moderated by ARC staff. You must be registered with ARC to be signed up to the forum. It is free to residents of the UK, annual fee for EU and rest of the world.
Website: https://www.arc-uk.org/for-parents/arc-forum
Helpline: 0845 077 2290
At a Loss
[All ages and needs]
A bereavement, signposting and information website. Particularly helpful for identifying local support and regional support.
Website: https://www.ataloss.org/
Care for the family
[All ages and needs – Christian faith]
A Christian faith organisation for families offering support and also bereavement support days, weekends, and online events.
Website: https://www.careforthefamily.org.uk/family-life/bereavement-support
Child Bereavement UK
[Children and young people experiencing bereavement or expected loss/parents and carers/professionals]
Offers free accessible online grief support to children and young people (up to 25) who are bereaved or facing the death of someone important, and the parents and carers of babies and children who are dying or have died. Also offer guidance and resources, tailored advice, training and education programmes for professionals.
Website: https://www.childbereavementuk.org
Phone: 0800 02 888 40
Text or WhatsApp: 07418 341 800 (Age 13+ for support via WhatsApp)
Email: ask@childbereavementuk.org or use our contact form
Live chat: click the ‘Chat with us’ button via the website
Child Death Helpline
[Child loss/families/professionals]
Helpline for family members and professionals impacted by the death of a child, run by bereaved parents.
Website: https://www.childdeathhelpline.org.uk/
Freephone: 0800 282 986– Monday to Friday 10am to 1pm and Monday to Sunday 19:00 to 22:00
Childhood Bereavement Network
[Children/young people/families]
An online signposting hub for those working with bereaved children, young people and their families across the UK.
Children of Jannah
[Child loss – Muslim faith]
Supporting bereaved parents with Muslim belief. Offers a helpline, meeting groups and online resources available to members.
Website: https://www.childrenofjannah.com/
Cruse Bereavement Care
[All ages and needs]
Offers support and resources and a helpline run by trained volunteers. Also offers local services with 80 branches across England, Wales and Northern Ireland.
Website: https://www.cruse.org.uk/
Helpline: 0808 808 1677
Email: helpline@cruse.org.uk
Cruse Bereavement Care (Scotland)
[All ages and needs]
Offers support to anyone who is struggling with a bereavement. Offers a range of support options, including a helpline, counselling, in-person or online support groups, plus an online ‘GriefChat’ in which you can talk anonymously to a grief counsellor online.
Website: http://www.crusescotland.org.uk/
Helpline: 0808 802 6161
Email: support@crusescotland.org.uk
Grief Encounter
[Children/young people]
For children and young people. Grief Encounter works closely with individuals, families, schools and professionals to offer support. Services include counselling, workshops, residentials and fun days, creative therapies, resources, and a trained trauma team.
Website: https://www.griefencounter.org.uk/
Phone: 0808 802 0111
Marie Curie Bereavement Support
[Adults]
Emotional support for adults aged 18+ who are grieving after someone has died from a terminal illness.
Website: https://www.mariecurie.org.uk/services/bereavement-support-service
Phone: 0800 090 2309
Email: support@mariecurie.org.uk
Samaritans
[All ages and needs]
Whatever you’re going through, a Samaritan will face it with you. Available 24 hours a day, 365 days a year.
Website: https://www.samaritans.org/
Freephone helpline: 116 123
Email: jo@samaritans.org
SANDS-Stillbirth and Neonatal Death Society
[Pregnancy/baby loss/families]
Offers a helpline plus support resources and practical advice. Also offers local support groups around the UK and online support meetings.
Website: https://www.sands.org.uk/
Helpline: 0808 164 3332
Email: helpline@sands.org.uk
Sibs
[Siblings]
Support for adults whose sibling with a health condition has died at any time, either during childhood or as an adult.
Website: https://www.sibs.org.uk/support-for-adult-siblings/adult-sibling-bereavement
SLOW
[Parents/siblings]
Offers support following the death of a child or sibling. Provides support groups, peer support, and workshops.
Website: https://slowgroup.co.uk/contact-us/
Phone: 07532 423 674
Email: info@slowgroup.co.uk
The Compassionate Friends
[Child loss/families]
Providing peer support to bereaved parents, adult siblings and grandparents who have experienced the death of a child, sibling or grandchild.
Website: https://www.tcf.org.uk/
Helpline: 0345 123 2304
Email: helpline@tcf.org.uk
The Good Grief Trust
[All ages and needs]
Run by the bereaved for the bereaved, the good grief trust offers a comprehensive online bereavement support website whilst aiming to normalise conversations about grief, loss, death and dying.
Website: https://www.thegoodgrieftrust.org/
Email: hello@thegoodgrieftrust.org
The Miscarriage Association
[Pregnancy loss]
For anyone affected by miscarriage, molar pregnancy or ectopic pregnancy.
Website: https://www.miscarriageassociation.org.uk/
Phone: 0303 003 6464 (Mon, Tues, Thurs 9.00am-4.00pm, Weds & Fri 9.00am-8.00pm)
Way: Widowed And Young
[Young widows]
Peer support online or in person. Exclusively for people aged 50 or under when their partner died.
Website: https://www.widowedandyoung.org.uk/
