Financial Impact 

As a bereaved parent to a child with a life-limiting condition, you may be facing challenging financial circumstances. This is not unusual. You may have lost access to certain benefits and be facing funeral costs (Brown et al, 2013). Some bereaved parents report a reduced capacity to engage effectively in paid employment, and fathers have reported feeling marginalized at work due to fatigue, the demands of caring at home and their inability to concentrate (Crowe, 2000). 

Loss of benefits 

If you are receiving disability benefits for your child, you may continue to receive these for a short time after their death. For more information, please visit the UK government’s website. 

Funeral Costs 

The prices charged for funerals vary considerably between funeral directors. Some funeral directors will not make a charge for a child’s simple funeral, but the charges for burial or cremation are outside of their control. 

The funeral director’s fees usually include: 

• Removal of your child’s body from their place of death (if you wish); 

• Supply of your choice of coffin and a shroud or gown (if you are not dressing your child yourselves); 

• Funeral car and driver; 

• Pallbearers; 

• Travel to the place of cremation or burial. 

Extra charges may be made for: 

• Night-time removal of your child’s body from the place of death; 

• Viewing your child’s body at the funeral directors; 

• Embalming; 

• Cars to follow the funeral hearse; 

• Additional travel, for example, from a church to a burial place; 

• Flowers; 

• Memorials, for example a headstone; 

• Announcement of your child’s death in the local press; 

• Order of service. 

There may be financial assistance available to help you with the cost of your child’s funeral: 

• Parents in Northern Ireland may be entitled to the Child Funeral Fund: https://www.nidirect.gov.uk/articles/child-funeral-fund  

• Parents in England may be eligible for the Children’s Funeral Fund: https://www.gov.uk/child-funeral-costs  

• Parents in Scotland may be entitled to the Funeral Support Payment: https://www.mygov.scot/funeral-support-payment  

• Parents in Wales may be entitled to help with their child’s funeral costs: https://www.gov.wales/child-funeral-and-other-related-costs-information-html  

Choice of Coffin 

Your child’s coffin may be the visual focus for the funeral. Coffins can vary in price considerably and it may be worth looking at different coffins before deciding. There are strict regulations about materials for coffins to be cremated, and funeral directors should be familiar with current guidelines. All coffins will have a name plate carrying your child’s name, which may also be inscribed with your child’s date of birth and the date of their death. 

Flowers 

Some funeral directors have their own florists. Others will have information to enable you to choose your own tributes. You can choose whether flowers are placed in the hearse with your child’s coffin, on top of the hearse or perhaps in another car. Alternatively, you may prefer that the flowers are taken to the cemetery or graveyard or place of worship in time for the funeral cortege to arrive.   

Order of Service 

It is not necessary to have a special order of service printed, but many families like to mark the occasion with a personal tribute. The funeral director can arrange printing, and you may like to include readings, music, songs or hymns of your choice and pictures of your child. 

Work 

As a parent, you are entitled to two weeks’ bereavement leave if you are classed as an employee and your child was aged between 24 weeks of pregnancy and 18 years at the time of their death. Whether or not the leave is paid will depend on your employment contract or your organization's policy. You may also be eligible for Statutory Parental Bereavement Pay.