A bereaved family is campaigning for the government to introduce legislation that gives parents statutory rights if their child is critically ill.
Ceri and Frances Menai-Davis want ministers to amend the Employment Rights Bill to bring in “Hugh’s Law”, which would offer job protection and financial support for parents of children aged 29 days to 16 years while they receive life-saving or palliative treatment.
Under current law, parents of newborn babies who become unwell in the first 28 days of their life are entitled to paid leave under the Neonatal Care (Leave and Pay Act). But if a child were diagnosed with a serious illness at 29 days old, the parents would no longer have access to this support.
Support for parents
The Menai-Davis family lost their son Hugh when he was six years old to a rare form of cancer.
Hugh underwent treatment for 10 months and during that time the couple met many parents who were struggling financially, with one often having to leave work to care for their child during intensive treatment, cutting household income by half.
They argue that there is a “cruel gap in support” based on the date a child is diagnosed, rather than the severity of a child’s illness.
Parents cannot apply for financial help until day 90 of the child’s illness, when they become eligible for Disability Living Allowance (DLA).
Their charity, It’s Never You, is campaigning for funds to be set aside in the next budget to offer a day-one grant for parents of a chronically sick child.
According to data from the Treasury, around 4,000 children every year have a hospital stay of two months or more. The costs of caring for a chronically ill child are estimated to be £750 per month.
If the government were to provide that level of support to these parents each year before they are eligible for DLA, this would cost an estimated £6 million.
Paralympian Baroness Tanni-Grey Thompson has recently tabled an amendment to the Employment Rights Bill in the House of Lords. If this gets majority backing from peers, it will be sent back to the Commons to reconsider it for inclusion.
Speaking to the BBC’s Today programme this morning, Ceri Menai-Davis said: “At the moment, parents are having to rely on the compassion and goodwill of employers. Why should a child that’s diagnosed with a serious condition at 27 days have more entitlements than a child diagnosed at 10 months old?”
Minister for employment rights Justin Madders said: “We recognise the difficulties that parents face when caring for critically ill children, and we know many employers will show compassion and understanding in these circumstances.
“We will look at further support for parents of critically ill children through our Carer’s Leave review to help modernise the world of work and provide good jobs for carers through our Plan for Change.”
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