Bereavement support for the EB community

When preparing for a death, you may want to consider the following:

• If you have the option, where would you choose to die? – hospital, home, hospice or somewhere else entirely.
• Who would you like by your side? – certain family members, friends or other special people in your life.
• What clothes would you like to be dressed in? – such as a favourite outfit or sports top.
• Would you prefer to be cremated or buried?
• Do you want to plan your funeral and services? – for example, consider if you would like to use an undertaker, the kind of coffin, and the type of service.
• Do you have a faith or cultural traditions you would like to be followed?
• Do you want anything special to be read or played at your service? – this could be songs, hymns, poems or readings.
• Do you have a preference for mourners to wear? – for example, black, bright colours, or a specific colour.
• Do you have a preference for mourners to send flowers or donate to a charity of your choice?

You and your loved ones will no doubt want to make the most of the time left, creating happy memories and where possible carrying out last wishes. You can speak to your Community Support Manager to see where DEBRA UK can assist with this. It may be a stay in one of our holiday homes, which are offered at highly discounted rates for our members, or a special day out.

There are also some charities which fund memory making moments and help wishes come true for children and adults who are facing the end of their life. Your Community Support Manager will be able to assist with applications for this. Such charities include:

Make a Wish – a charity granting wishes for children with critical illnesses, to bring joy to children and their loved ones.

Purple Heart Wishes – a charity funding memory making moments for adults (18-55 years) who have been diagnosed with a terminal illness.

If you’re preparing for a death and are looking for more care, we’ve put together guidance on finding end of life care.

There are some other charities that can help you find additional care as well:

• Children’s Hospice Association Scotland – an organisation providing hospice services in Scotland for babies, children and young people who have life-shortening conditions.
• Hospice UK – the national charity for hospice and end of life care that can also help you find the adult and children’s hospices that are closest to you.

If your loved one dies at home, even under regular circumstances, you should contact 111 and your GP so that they can certify the death. If the death was unexpected, you should call 999. If your loved one dies whilst in hospital, you should follow hospital policy.

Once you have reported the death, the GP or emergency services will contact an undertaker to transport the person who has died to a local hospital, mortuary or the undertaker’s facilities. Most will not charge for this service; as there is an expectation for you to arrange the funeral with them, this service is often included in the funeral costs. Children can sometimes be taken to a hospice and laid to rest in a specialist bereavement suite. This allows family more accessibility and time to say goodbye in a comfortable, nurturing environment.

After you have performed any cultural traditions or ceremonies for the deceased involving the body (e.g. washing), or changed any bandages, the undertaker will transport the person who has died. The undertaker will treat them with dignity and respect, allow you time to say goodbye, and explain what will happen next. The undertaker will always handle your loved one with care, but this is even more essential for patients with a skin condition. A body bag is used to preserve the body and dignity of your loved one.

A post-mortem (also known as an autopsy) may be required if the cause of death is unknown and will be performed by a coroner. This is usually carried out within three days of the referral but may take longer.

If the cause of death is known, the death should be registered with the Registry Office for the area the person died in within five days (or eight days in Scotland). You will need to have the medical certificate from the GP (or coroner if a post-mortem was performed). Other useful documents include an NHS card, birth certificate, driving licence, council tax bill and marriage/civil partnership certificate.

You will receive an official death certificate once the death has been registered. You could consider requesting multiple copies to help avoid delays or stress. You will need the death certificate for the funeral and it may be requested by other agencies (e.g. banks).

Knowing who to tell when your loved one has died can be difficult. We recommend making a list of all family members and friends, utility companies, banks and other agencies that will need contacting. Having a list and being able to mark them off one by one will help you to know who you have already contacted, and organise those who should be notified first.

The UK government’s Tell Us Once service allows you to notify all government, DVLA and benefits agencies at once.

Having to talk to children about the death of a family member, friend or other person of significance in their life comes with a unique set of challenges. Children might need help to understand the situation.

Sometimes reading books about death can help children understand and realise they are not alone. Cruse Bereavement Care have free booklets to help children and young people with grief, whilst Marie Curie have created a list of books for and about grieving children. Your doctor might also have some useful information.

When you are ready you may want to go through your loved one’s possessions, such as clothes, jewellery, and furniture. You can see if there is anything you would like to keep, such as items with sentimental value. If you are willing to part with any items, you could consider giving them away to people who might have a fond attachment to them or donating items to a charity shop. Our stores may be able to help by taking unwanted items or collecting furniture.

If you have equipment provided by an Occupational Therapist/your local authority, they will be able to organise recollection of these items when you are ready. The wheelchair service will be able to arrange collection of wheelchairs and scooters provided by them.

For other items such as medication and dressing, please speak to your EB nurse or pharmacist about returning these. Three main charities will collect and redistribute dressings: Jacob’s Well Appeal, Inter Care, and Hospices of Hope. These are based in Birmingham, Leicester and Kent, respectively. Your items will either need to be dropped off or posted to them.

Any items that were funded by a DEBRA UK grant do not need to be returned. If you have bought or had DEBRA UK funding for disability equipment that you would like to donate, Scope have some useful information.

At this stage, you may want to do something to honour the deceased’s memory. For instance, by either creating a remembrance page, fundraising page, or through another meaningful gesture. This could be making a memory book of photos and letters from friends, planting something special in the garden, creating a patchwork from their clothing, etc.

If your loved one had a Will, this is also the time to carry out their specific wishes.

If they did not have a Will, taking care of their estate is still manageable but will take a bit longer. MoneyHelper has a full guide on managing an estate if there isn’t a Will.

Funeral Expenses Payment

The government’s funeral funds are available to people on certain benefits and can help cover some of the expenses of a funeral. A Funeral Expenses Payment will help cover some of the costs of:

• Burial fees for a particular plot.
• Cremation fees (including the cost of the doctor’s certificate).
• Travel to arrange or go to the funeral.
• Cost of moving the body within the UK, if it’s being moved more than 50 miles.
• Death certificates or other documents.
• Other funeral expenses – funeral director’s fees, flowers, coffin, etc.

If you live in Scotland, you should apply for a Funeral Support Payment instead.

You can find more information about Funeral Expenses Payments on the Government website.

Children’s Funeral Fund

All children’s funerals are also entitled to the Children’s Funeral Fund for England. This can help to pay for some of the costs of a funeral for a child under 18 or a baby stillborn after the 24th week of pregnancy. You will be able to discuss this in more detail with an undertaker.

Bereavement Support Payment

You might also be entitled to Bereavement Support Payment if your spouse or civil partner has died and if they either made National Insurance (NI) contributions for at least 25 weeks or died due to an accident at, or disease caused by, work.

The other criteria you’ll need to meet and more information about the payment can be found on the Government website.

Child Funeral Charity

The Child Funeral Charity offers financial support to families in England and Wales who have lost a child aged 16 years or younger. They can help with funeral expenses, along with practical advice and guidance.

If your child is seriously ill, The Charlie & Carter Foundation may be able to help take away the financial stress of everyday living costs – from helping with mortgage payments, rent and utilities, to providing food vouchers and covering other expenses.

There are other charities offering bereavement support that may be able to help you too, such as:

Child Bereavement UK – a charity helping families rebuild their lives when a child grieves or when a child dies. They offer free, confidential bereavement support for individuals, couples, children, young people, and families, by telephone, video or instant messenger, wherever you live in the UK. They also offer face-to-face support from a number of locations.

Child Funeral Charity – a charity offering emotional as well as financial support to families in England and Wales who have lost a child aged 16 years or younger.

Cruse Bereavement Care and Cruse Bereavement Care Scotland – a charity offering face-to-face, phone, email, and online support for anyone who is bereaved.

The Good Grief Trust – a charity that hosts pop-up support groups and has a directory of support offered from other agencies across the UK.

Widowed and Young – a charity offering support for people aged 50 and under who have lost a partner. For their members, this includes a 24/7 helpline providing counselling and advice.

Winston’s Wish – a charity supporting bereaved children, teenagers, young adults (up to 25) and their parents and carers.