- Children’s Commissioner calls on government to introduce 12 weeks of paid leave at 90 per cent of normal pay for parents of seriously ill or disabled children
- Existing employment rights leave families under immense pressure, facing additional costs, lost earnings and reduced hours as they struggle to balance work with being at their child’s bedside
- Dame Rachel de Souza says new paid leave must be part of a wider reform of NHS and children’s social care to better support children and families who are ‘stuck’ in hospital because of a lack of NHS and children’s social care support
Parents should not be forced to choose between being at their seriously ill child’s bedside and keeping their job, the Children’s Commissioner has argued, as she urges the government to introduce new paid leave for parents of seriously ill or disabled children.
Dame Rachel de Souza is backing calls for parents of children with serious physical or mental health conditions to receive 12 weeks of paid parental leave at 90 per cent of their normal pay, to provide immediate financial security following a diagnosis or serious deterioration in a child’s health.
In her response to the Department for Business, Innovation, Science and Trade’s consultation on employment rights for unpaid carers and parents of seriously ill children – which closes tomorrow – the Commissioner says introducing paid leave for parents of seriously ill children, “Hugh’s Law”, should be in place alongside a form of paid carer’s leave and a right to return to work following a longer period away, helping families whose children have complex or fluctuating needs to remain in employment while providing the care their children need.
Children’s Commissioner Dame Rachel de Souza said:
“All over the country parents have told me about the impossible choices they make, splitting time between caring for their seriously ill and disabled children and trying to hold down a job during this immensely challenging period of their lives. “Whether a child is diagnosed with cancer, sustains a brain injury, develops complex medical needs or experiences a serious mental health condition, they will need their primary carers to provide love, care and support throughout this time. We should never force parents to choose between holding down a job and being by their child’s bedside.
“Our existing employment rights are failing parents and carers, as they struggle to balance caring responsibilities with caring for their seriously ill children. Families of seriously ill or disabled children desperately need a form of paid leave that enables them to care for and spend time with their child following a diagnosis or crisis in their child’s health.
“While I welcome these proposals outlined in this employment rights consultation, they are only part of the answer to what these parents need. The government must also tackle the wider crisis in children’s health and social care services that leads to children being ‘stuck’ for too long in hospital in the first place. Too many children do not have the right support available in the community, adding to the immense pressure already facing their families. The government must now make sure employment protections are matched by the health and social care support families need to care for their children.”
The proposals outlined in the government’s consultation – named in memory of Hugh Menai-Davis after a campaign by the charity set up by his parents, It’s Never You – Hugh’s Law seeks to guarantee paid leave for parents of seriously ill children from day one of their illness.
Ceri Menai-Davis, Co-Founder of It’s Never You and campaign lead for Hugh’s law, said:
“The Children’s Commissioner’s submission to the government consultation adds significant weight to the case for Hugh’s Law. Earlier this year, her report recognised the immense pressure placed on families when a child is seriously ill and recommended improved paid leave for parents. This is further evidence that change is urgently needed.
“No parent should be forced to choose between being beside their seriously ill child and keeping a roof over their family’s head. The government must now listen to families, act on these recommendations and turn Hugh’s Law into legislation.”
In the Commissioner’s report Children waiting to leave hospital, recent analysis found that across one generation of children born in or after 2008, 260,141 children spent three weeks or more in hospital during their childhoods. Of these, 34,846 spent more than three months in hospital, while 1,342 spent more than a year in hospital. Long hospital stays disproportionately affect children living in more deprived areas, and children from ethnic minority backgrounds.
Some children are in hospital longer than they need to be because of fragmented and inconsistent care in the community. Their parents can also be forced to leave work or reduce their hours to provide complex, round the clock care when they cannot access sufficient support from the NHS and disabled children’s social care.
One mother, whose five-year-old child had experienced a long hospital stay, told the Commissioner’s office:
“I’ve had to quit my job, well, I haven’t just yet, I’m still technically I’m sick, but next month when my sick note runs out. I will be quitting my job, so I’m losing a lot of money, so it’s, yeah, it’s really hard. It’s really hard.”
In the consultation response, the Commissioner supports:
- Paid leave for 12 weeks at 90 per cent of full pay, with eligibility demonstrated through a certificate from a relevant professional.
- Extending unpaid carer’s leave from five to 10 days a year, introducing paid carer’s leave and creating a right to return to employment following an extended period of caring responsibilities.
The financial impact of caring can be particularly acute for families whose children require lengthy hospital stays. Parents may face additional costs including additional childcare costs, travel costs including petrol and parking, buying additional food and toiletries, and phone bills all while potentially losing earnings.
One bereaved mother told the Commissioner’s office that repeated hospital admissions had affected her partner’s ability to find full-time work:
“[Partner] struggled then to get into some at full time because we were in and out in and out hospital. So that impacted on our employment.”
The Commissioner says employment rights must form part of a wider cross-government approach to supporting children with serious illnesses and disabilities.
Dame Rachel said:
“Paid leave is only part of the answer. My research shows too many seriously ill children are spending too long ‘stuck’ in hospital because the NHS and children’s social care cannot provide the nursing care, care workers, specialist support or suitable school places their children need. This can have devastating effects, not just on parents as the balance children’s care and work, but also on children’s lives.
“It is vital that government ensures improvements to employment rights are matched by better support from health and social care, so parents are not forced into poverty or out of work simply because their child is seriously ill.”
