Bereavement support

You don’t have to do everything at once 

In the first days and weeks after a death, there can be lots of things to think about. You may be asked to make decisions when you are exhausted and overwhelmed. You don’t have to do everything today. Ask someone you trust to help with phone calls, paperwork or practical tasks if you can. 

In the first few days and weeks following your bereavement, you’ll need to:

• Register the death and understand the role of a medical examiner or coroner
• Contact a funeral director and consider funeral arrangements 
• Obtain death certificates and check whether Tell Us Once is available 
• Contact relevant healthcare professionals and services 

Support from Dravet Syndrome UK 

Bereavement Fund – Dravet Syndrome UK £1,000 Bereavement Gift 

Registering a death and next steps 

• What to do when someone dies: step by step | GOV.UK – Helpful guide which practically takes you through each thing you may need to do when someone passes away.
• What to do when someone dies: step by step, resources and peer-support | Sue Ryder
• Inquests in England and Wales
• Inquests in Scotland
• Inquests in Northern Ireland
• What to do after someone dies: Register the death | GOV.UK — Guidance on registration and what happens next. 
• What to do after someone dies: Tell Us Once | GOV.UK — Report a death to many government organisations through one service, where  available. 

Funeral arrangements and costs 

• What to do after someone dies: Arrange the funeral | GOV.UK — Information about funeral arrangements. 
• Children’s Funeral Fund for England | GOV.UK — Help with certain eligible funeral costs for children under 18 where the  burial or cremation takes place in England. 
• Funeral expenses payment | GOV.UK — Help with funeral costs for eligible people receiving certain benefits in England and Northern Ireland.
• Funeral expenses payment | Mygov.scot — Help with funeral costs for eligible people receiving certain benefits in Scotland.

Work, benefits, money and legal matters 

• Statutory Parental Bereavement Pay and Leave: Overview | GOV.UK — Check current eligibility and entitlements. 
• Citizens Advice — Independent advice about benefits, finances, housing and legal/practical issues. 

Looking after yourself 

There is no single way to grieve. You might feel sadness, anger, guilt, numbness, relief, confusion or many  different emotions at the same time. You may have good days and very difficult days. Birthdays, anniversaries  and other reminders can bring difficult feelings even years later. You don’t have to ‘move on’; you can learn to live  with grief while continuing to remember and love the person who died. 

Organisations that may be able to help

• The Compassionate Friends  – A national charity offering support to parents and families who experience the death of a child at any age. They provide a helpline, online support, local support groups and opportunities to connect with others who understand the experience of losing a child.

• Child Bereavement UK – Offer free UK wide support for bereaved parents, Children and Young People to help them ‘rebuild their lives when a child dies’. Their service includes telephone, live chat and text support.

Resources

• My child has died. How do I survive my grief?
• Grieving for our child who had disabilities or complex needs
• Leaflets for bereaved parents | Grief for particular age groups of children
• Our surviving children

Bereavement after living with Dravet Syndrome 

Losing a child after years of caring for them can bring a unique kind of grief. Family life may have revolved around  medication, appointments, hospital stays, care, equipment, professionals and keeping your child safe. After a  death, the sudden absence of those routines can feel overwhelming in its own way.

You may also have practical questions about equipment, medication, services, professionals and organisations that were involved in your child’s care. You can contact our Family Support Team if you are unsure what to do next. 

• Debbie’s story – Dravet Syndrome UK 
• Grieving for our child who had disabilities or complex needs 

If you need help right now 

If your grief feels unbearable or you are worried about your mental health, please reach out for help. You deserve support.

• If there is an immediate risk to life, call 999 or go to A&E.
• Contact your GP or NHS 111 for urgent health advice. 
• Samaritans: call 116 123, free, any time, day or night. 
• Text SHOUT to 85258 for free, confidential support 24/7.

Supporting siblings and other children 

Children and young people grieve too, but they may show their grief differently from adults. They may have questions, worries or feelings that are difficult to explain.

Siblings may also be grieving while watching their parents grieve and worry about adding to their grief.

For children and young people 

• The Compassionate Friends | For bereaved siblings – Offers a range of support specifically for bereaved siblings, including peer support, online groups, bereavement support packs, leaflets and publications, videos, talks and articles. The Compassionate friends also provide opportunities to connect with other siblings who understand the experience of losing a brother or sister.
• Sibling Support – Helping you cope with the death of your brother or sister 
• How to cope with the death of my brother or sister | Sibling Support 
• Hope Again – designed for young people by young people

Resources

• When someone special dies leaflets | Child Bereavement UK – leaflets designed to help young people to understand their feelings after a bereavement. 
• My sibling has died. How do I cope? | The Compassionate Friends 
• A sibling’s grief – for young adults | The Compassionate Friends 

For parents and carers 

Support in explaining death in an age-appropriate way. 

• Explaining death and dying to children | Child Bereavement UK 
• How to tell a child someone has died | Marie Curie     

Children and young people with a learning disability 

Someone with a learning disability may need information about death and grief explained differently. They may  need clear language, accessible resources, repetition and extra time to understand what has happened. 

• Dealing with bereavement and support with grief | Speak to a bereavement counsellor | Mencap — Information on coping and explaining loss.
• How to feel better after someone you care about dies | Mencap | Easy Read  — Information and resources, including Easy Read material. 
• Explaining death and bereavement | Scope UK — Guidance from a disability charity. 
• Supportive talks and webinars about grief | Child Bereavement UK — Explore accessible resources and support. 

Grandparents, family and friends 

The death of a child affects the whole family. Grandparents, aunts, uncles and close friends may also be grieving while trying to support the child’s parents and siblings. 

• Grief of grandparents | The Compassionate Friends — Explore resources for grandparents and extended family.
• When a grandchild has died | Child Bereavement UK – Look for guidance when a grandchild has died. 

Resources

• My Grandchild has died | The Compassionate Friends
• Suggestions for family and friends of bereaved parents – Helping Bereaved Parents | The Compassionate Friends

Sometimes the hardest part of grief can begin when the funeral is over and everyone else starts returning to normal life. You may find that people stop asking how you are, while your grief is still very raw. 

• Explore advice for grief over time and special occasions – The Compassionate Friends 
• Find support for families and young people – Child Bereavement UK

Grief has no timeline, and neither does our support.

You are, and always will be, part of the Dravet Syndrome UK community. Our support doesn’t stop after the immediate days or weeks following a loss. We’re here for you, whether it’s months or years later.

You are always welcome at Dravet Syndrome UK events whenever the time feels right for you. You can also access our support at any stage, whether you’d like someone to talk to, have questions, or simply want to feel connected.