Together for Short Lives
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Reducing the financial cost to families when a child dies

Families of children with life-limiting conditions face an unfair financial burden when their child dies. As part of the Fair Funerals campaign, Together for Short Lives is asking the government to increase the amount of money available for funeral expenses through the funeral payment in line with funeral cost inflation. We are also calling on the UK’s other governments to follow Wales’ lead by scrapping burial charges for children and making child deaths exempt from the new death certification fees structure.

What do we know about the costs that families face?

The prospect of losing a child is a parent’s worst nightmare. Tragically, for the parents and carers of 5,000 babies, children and young people who die in the UK every year, this nightmare becomes a reality.

When the worst happens, parents forced to come to terms with the impact of losing their child must also contend with a number of other issues. If the child dies with a long-term disability, they may also have to endure significant short-term financial hardship caused by the immediate loss of their income. This could be due to the end of benefits such as carer’s allowance, disability living allowance and child benefit. This can often compound the debt legacy which families of children with life-limiting or life-threatening conditions may have incurred as a result of the additional costs of caring for their child over a long period of time.

The cost of caring for a disabled child

Joseph Rowntree Foundation’s research showed that in 2013/14, 27% of people in families where someone is disabled were in poverty, compared with 19 per cent of those in families where no one is disabled, using the standard after housing costs measure.

Contact’s 2018 ‘Counting the Costs’ survey found that families who provide long-term care for a disabled child face huge financial difficulties. This survey showed that in the past year, over a third of families have extra disability and care related costs of £300 or more per month. They also found that 7% of families had taken out more than five loans in the past year and that almost half (46%) the families had been threatened with court action for non-payment of bills. This is partly explained by the fact that 87% of families reported having caring responsibilities that mean they are unable to work as much as they would like. Additionally, the survey found that:

  • 26 per cent of parents said their child’s condition has worsened due to going without basics
  • 33 per cent have taken out a loan to pay for food
  • 26 per cent of disabled children are going without essential therapies.

Research by Corden et al. shows that families caring for a child with a life-limiting or life-threatening condition face additional financial pressures as they are ‘less likely to be in paid employment than other parents and may face financial hardship associated with lack of opportunity to work’. This is because parents may leave their employment, or not join the labour market so that they can care for their child – often 24/7. Because the trajectory of their child’s condition is likely to be unstable, it is also difficult to plan time off work to attend medical appointments or to deal with long periods of acute illness. Corden et al. found that these factors, as well as difficulties finding appropriate substitute care to allow them to go to work, mean that ‘during the period leading up to a child’s death, both parents may therefore be depending on out-of-work income.’

CLIC Sargent’s research shows the financial impact of caring for children and young people with cancer:

  • Parents spent an average of £600 in additional expenses a month during their child’s active treatment.
  • Three in five (61%) parents had accumulated some form of debt as a result of their child’s cancer diagnosis, mostly owed to family and friends or to credit card companies. One in six (17%) had borrowed over £5,000,
  • As a result of their child’s cancer diagnosis, two in five (42%) parents stopped working, half (49%) experienced a loss of earnings, and almost a third (29%) felt they were able to do less at work.
  • Hospital parking was also a considerable cost for those living in England, costing parents an average of £44 a month. Although some exemptions are available at different treatment hospitals, almost a third of parents (29%) were not offered parking exemptions at their main treatment hospital.

What are the UK’s governments doing?

Together for Short Lives is delighted that, when Prime Minister, Theresa May intervened to establish a Funeral Fund for grieving parents who have lost their child. Under the scheme, parents will do not now have to meet the costs of burials or cremations. Fees are waived by all local authorities and met instead by government funding. The Welsh Government has also scrapped burial charges for children in Wales. The news was announced by Welsh Government First Minister Carwyn Jones AM during his speech to the Welsh Labour conference in 2017. Both reforms followed a determined, passionate campaign led by Carolyn Harris MP who lost her own young son and found that she was unable to afford to bury him.

In May 2018, the Scottish Government announced that bereaved parents will no longer be charged by local authorities to bury their children.

We were also delighted that the UK Government decided not to charge a new medical examiner fee to parents bereaved of children up to the age of 18.

In November 2019, the government announced that families grieving the loss of a loved one will receive up to £1,000 to help meet the costs of a funeral.

What would Together for Short Lives like to happen?

We call on all the UK’s governments to taper benefits paid to families when their child dies, rather than ending them immediately.

Policy and influencing