Hugh’s Law demands paid leave for parents of critically ill children

A family that has lost a child is calling on the government to pass legislation giving parents rights in cases where their child is critically sick.

Ceri and Frances Menai Davis want the Employment Rights Bill amended to include “Hugh’s Law”, a law that would provide job protection and financial assistance to parents of children between 29 days and 16 years old while they receive palliative or life-saving treatment.

Neonatal Care Act provides paid leave to parents of babies born within the first 28 day of life. If a child is diagnosed with a serious disease at 29 days of age, parents will no longer be eligible for this type of support.

Hugh, the son of Menai and Davis, died at age six from a rare type of cancer.

Hugh was treated for 10 months. During that time, the couple met parents who were financially struggling. One parent often had to leave their job to care for his child during intensive treatments, reducing household income in half.

They claim that the support is unfairly based on when a child was diagnosed rather than severity of the illness.

Disability Living Allowance is available to parents after 90 days of their child’s illness.

It’s Never You is a charity that campaigns for money to be set aside for a grant to parents of a child with chronic illness.

The Treasury reports that every year, 4,000 or so children spend at least two months in hospital. Care for a child with chronic illness is estimated at PS750 per week.

The cost of providing this level of support each year to these parents before they become eligible for DLA is estimated at 6 million pound sterling.

Recently, Baroness Tanni Grey Thompson, a paralympian baroness from the House of Lords, introduced an amendment to Employment Rights Bill. This amendment will be sent to the Commons for reconsideration if it receives majority support from peers.

Ceri Menai Davis, speaking to BBC Today today, said that parents must rely on employers’ compassion and goodwill. Why should a baby diagnosed with a serious illness at just 27 days old be entitled to more benefits than one diagnosed at ten months?

Justin Madders, Minister for Employment Rights, said: “We understand the challenges parents face in caring for critically-ill children and we are confident that many employers will be compassionate and understanding under these circumstances.

We will review the Carer’s Leave Review to see if we can provide more support for parents with critically ill children. This will help modernise work and create good jobs for caregivers through our Plan for Change.

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