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

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.

Families with disabled children faced significantly higher costs compared to other families. Research by our partners Contact has found that nearly two thirds of disabled parents say that caring responsibilities mean they or their partner has given up paid work, losing on average losing £21,270 from their family income. Between 2020 and 2021, as a consequence of shielding, almost a third reported that they got into debt or borrowed money.

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.

Access to the benefits system

Typically a parent of a seriously ill child will not be in employment and will solely rely on income from the child’s disability living allowance (DLA), Carers’ Allowance and Universal Credit top ups that include Child Benefit, Child Disability Allowance.

When a child dies and one parent is the full-time carer, there is a ‘run-off’ period of 6-8 weeks for Child Benefit, Child Disability Allowance (UC) and Carers Allowance.

However, the child’s DLA stops the day the child dies, including the mobility component; this can mean that the family wheel chair adapted vehicle will need to be returned, in some cases leaving the family abruptly without a vehicle.

Many children who seriously ill have a personal budget; if they choose to receive this as a direct payment, they can employ directly employ professionals to meet their child’s needs. However, the personal budget stops the day the child dies, leaving the family to cover the costs of the notice period agreed.

Parents are entitled to the two bedroom allowance on the universal credit rent component; however, when the child dies, this changes to the one bedroom allowance reducing parents’ monthly income further.

For a family already in enormous distress and grief from the loss of their child, this leaves them financially strained and places the parent, whom was the full time carer, in the process of having to prove that he or she is not fit for work or work related activity in a Work Capability Assessment. This can happen in the first six months of the bereavement.

The full-time carer parent may have been a full-time carer for several years, making it more challenging for them to find work.

We ask ministers to consider ensuring that parents who have been full-time carers of a child who has died automatically receive Limited Capability for Work and Work Related Activities (LCWRA) for the first 12 months following the child’s death, if they are in receipt of Universal Credit.

The cost of child funerals

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.

Together for Short Lives is asking the UK Government to go further by increasing the amount of money available for funeral expenses through the funeral payment in line with funeral cost inflation.

Statutory paid leave for parents bereaved of a child

We are pleased that two weeks’ paid leave is now available to bereaved parents across the UK.

Policy and influencing