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Bereavement support

Bereavement support

Last updated 28/05/20

We understand that losing a loved one is difficult, so we are here to help if you need practical or emotional support.

Contact your DEBRA EB Community Support Manager for one-to-one help, talking through grief and emotional issues. Losing a loved one can also involve financial pressures and we would be happy to talk you through your options and provide practical advice.

If necessary, your EB Community Support Manager can assist family members with a referral to bereavement counselling and help you to access the support already available in your local area.

Some people find writing a eulogy or poem is helpful during the healing process, so we have created remembrance areas – one for children and young people (up to 16 years of age) and one for adults – offering families a chance to celebrate the life of a loved one with EB who has died.

Managing death during the pandemic

The UK is seeing a rise in deaths overall due to the current Coronavirus (COVID-19) pandemic. This situation is being monitored and reviewed and the government guidance is being updated; however, there have been some major changes to how death should be managed during the outbreak. No one knows if things will return to normal, so it is important to note the information below should your loved one die.

DEBRA can help

DEBRA’s Community Support Team is available to offer you bereavement support in many ways – advocacy, financial, emotional and more.

Your DEBRA Community Support Manager can be on hand to offer a listening ear when grieving your loved one, refer you to other groups for further support in your local area, help make funeral arrangements, work with you to access benefits entitlements (and possibly grants), as well as assist in creating a DEBRA remembrance page.

Please contact your Community Support Manager for more information on how you can be supported during this difficult time.


The following words are used throughout this section of the website:

  • Celebrant – a person leading the funeral ceremony or memorial service; may or may not be of a particular faith depending on the wishes of the family.
  • Coroner – a person dedicated to determining a cause of death when the cause is unknown.
  • Eulogy – a written memory, short message or something special to you and your loved one.
  • Faith Leader (Religious Leaders) – a person who carries out a religious funeral ceremony or memorial service.
  • Funeral Director (undertaker) – person who arranges the burial or cremation of the deceased.
  • Mortuary – an area where dead bodies are stored until they are buried or cremated, usually within a hospital or Funeral Director’s facility.
  • Post-mortem (autopsy) – an examination of a dead body to determine the cause of death.