Keilan Arblaster, our Policy Involvement Assistant, outlines the implications of the bill for our community
The Brain Tumour Charity has completed its consultation response to the Parental Bereavement Leave and Pay Bill, which cleared its third reading last month with unanimous support and is currently undergoing further assessment in the House of Lords before eventually becoming law.
The private members Bill, tabled my Kevin Hollinrake MP, will legally embed an entitlement of two weeks leave and pay for parents who have lost a child.
Currently, there are no legal provisions in place for leave and pay from work. As such, bereaved parents have so far had to rely on their employer's internal compassionate leave policy.
Sacha Langdon-Gilks (pictured) is the Lead Champion of The Brain Tumour Charity's HeadSmart Campaign, and advocates for many other charities. Her son DD (David) died from a brain tumour aged just 16. “Families where one or both parents have had to terminate employment fully or partially to support a fragile, life-limited child and other children will receive nothing as it stands.
“My family falls into that category. For our families to fall off a cliff-edge at the death of a child where our 'family' of health care professionals instantly stops, sibling support groups stop, care benefit stops and even transport can get removed immediately with no stop-gap is cruel in the extreme."
The brain tumour community
Although the Bill has been welcomed as a start by bereaved parents, there continues to exist pressing issues which need to be addressed, particularly for parents who have lost their child to a brain tumour.
Brain tumours take the lives of more children under 14 than any other cancer, with over 200 children a year dying from a high grade brain tumour.
The Charity has found a few limitations with the Bill, most notably with the disparity of entitlement between employed and self-employed parents, and the arbitrary distinction of entitlement between parents who have lost a child and parents who suffer a stillbirth.
The Bill prescribes small firms to be entitled to reclaim the full cost of pay from the Government whilst larger firms are able to recoup around 90% of costs, meaning there will be no legal support within the parameters of the Bill for self-employed parents.
This has particularly significant implications for parents of a child with a brain tumour.
Owing to the often short lifespan of children diagnosed with high grade tumours, parents are frequently left with substantial financial costs incurred from treatment and specialist equipment by the time of the death of their child.
Further to this, 62% of children who survive a brain tumour will be left with a life-altering, long-term disability with childhood brain tumour survivors ten times more likely to suffer a long term disability than well children.
Many parents will often have to reduce their working hours, or switch to self-employment in order to perform full-time caring responsibilities for their child, resulting in a significant reduction of income and loss of qualification for bereavement entitlement.
Child bereavement and stillbirths
The Charity also finds the distinction of entitlement between parents who have lost a child and parents who suffer a stillbirth as arbitrary, attempting to quantify the unimaginable weight of bereaved parents' grief.
Current provisions for parents who suffer a stillbirth after 24 weeks are entitled up to 52 weeks' statutory Maternity Leave and up to 39 weeks of statutory Maternity Pay or Maternity Allowance.
The Charity has advised similar time-off-work consideration should be given to bereaved parents who have lost a child to a brain tumour.
The Brain Tumour Community
We will always respond to political changes that impact those who suffer a brain tumour diagnosis.
Our community is at the forefront of everything we do and we will endeavour to fight for those who have suffered a brain tumour diagnosis to make sure their concerns are heard and their needs are met.
Although we welcome the introduction of the Bill as a start for providing grieving parents the support they deserve, it should undertake full and extensive consideration of the complex emotional and financial implications parents suffer after losing their child to a brain tumour.
Sacha Langton-Gilks has written a book to help other grieving parents.