Parents of critically ill children are facing an unbearable burden as they struggle to balance caring for their terminally ill child with the need to earn a living, campaigners claim.
The case of six-year-old Hugh Menai-Davis, who died from cancer last year after his family had to sacrifice work to be at his bedside, has brought this issue into stark focus. Hugh's parents, Ceri and Frances, were told by their GP that Hugh's stomach pains were likely gastroenteritis, but he was actually diagnosed with a rare type of cancer called rhabdomyosarcoma.
Despite initial successful treatment, the cancer remained, and Hugh died several months later. His family has spoken out about the devastating gap in support afforded to families whose children are seriously ill, as there is no statutory financial support available once the child reaches one month old.
This means that parents of critically ill children must either take four weeks of unpaid leave or apply for benefits that can be slow to process and exclude many. The pressure on these families is immense, with Ceri Menai-Davis saying it's "impossible" to make decisions between staying by their child's bedside or going to work to keep a roof over their heads.
The family has been pushing for a new statutory provision, known as Hugh's law, which would entitle the parents of children in hospital long-term to financial support. This proposal has gained momentum after Premier League football club Brentford became the first UK company to adopt it on its staff, with 12 weeks of full pay available if a child becomes seriously ill.
Ministers have agreed to consider the policy as part of a review launched in November, and the family is cautiously optimistic that it could soon become law. Ceri Menai-Davis said it's "overwhelming" to see the club take up its proposals and for the government to be considering introducing it as a policy.
For them, this would be a victory, one that could bring some comfort in the midst of unimaginable grief. As they continue to advocate for change, they hope that their son Hugh would be proud of his parents' efforts to make a difference in the lives of others who are facing similar struggles.
The case of six-year-old Hugh Menai-Davis, who died from cancer last year after his family had to sacrifice work to be at his bedside, has brought this issue into stark focus. Hugh's parents, Ceri and Frances, were told by their GP that Hugh's stomach pains were likely gastroenteritis, but he was actually diagnosed with a rare type of cancer called rhabdomyosarcoma.
Despite initial successful treatment, the cancer remained, and Hugh died several months later. His family has spoken out about the devastating gap in support afforded to families whose children are seriously ill, as there is no statutory financial support available once the child reaches one month old.
This means that parents of critically ill children must either take four weeks of unpaid leave or apply for benefits that can be slow to process and exclude many. The pressure on these families is immense, with Ceri Menai-Davis saying it's "impossible" to make decisions between staying by their child's bedside or going to work to keep a roof over their heads.
The family has been pushing for a new statutory provision, known as Hugh's law, which would entitle the parents of children in hospital long-term to financial support. This proposal has gained momentum after Premier League football club Brentford became the first UK company to adopt it on its staff, with 12 weeks of full pay available if a child becomes seriously ill.
Ministers have agreed to consider the policy as part of a review launched in November, and the family is cautiously optimistic that it could soon become law. Ceri Menai-Davis said it's "overwhelming" to see the club take up its proposals and for the government to be considering introducing it as a policy.
For them, this would be a victory, one that could bring some comfort in the midst of unimaginable grief. As they continue to advocate for change, they hope that their son Hugh would be proud of his parents' efforts to make a difference in the lives of others who are facing similar struggles.
cant believe theres no proper support system in place for them, its just not right. if brentford fc can give their staff 12 weeks of pay when a child is seriously ill then why can't governments? it feels like its all about the parents being 'responsible' and shouldering this burden alone 
taking away four weeks of unpaid leave or relying on slow-processed benefits is just too much pressure to put on parents who already have enough to worry about. 
And I hope the government really does consider implementing Hugh's law, it would be a game-changer for families in similar situations. 
But if we can make a difference by pushing for change, then I say let's do it! 
But at the same time, I don't know if we're just enabling these parents by giving them a free pass on work. Like, shouldn't they be able to get back to their jobs and provide for themselves again after a while? 
On the other hand, it's not like they have a choice - they're stuck caring for their sick kid 24/7... I guess that's just part of the job, right? 
But then again, if we don't do something to help these families out, aren't we basically saying that their kid isn't worth paying for? 
That would be a pretty harsh message to send.
situation! It's like, these parents are already going through the toughest time of their lives with their child being super sick, and then they have to worry about how to pay the bills? It's just not right 
.
.
. It's heartbreaking to think about families having to choose between being with their sick child or keeping a roof over their heads. 4 weeks of unpaid leave isn't going to cut it, fam! 
. The fact that Brentford FC has taken this initiative and the PM is even considering it is a huge step forward 
. Hugh's law should be a thing, stat! 
. It's overwhelming for these families to have to navigate all the paperwork and benefits system when they're already dealing with so much grief and stress. They need help, and we should be supporting them more 
.
, and then they have to worry about paying bills 
. I wish more people would raise awareness about this issue 
. Maybe if everyone knew how tough it was for these families, there'd be more support 
. Fingers crossed that Hugh's law becomes a reality 
and those parents can get some much-needed help 
. Four weeks of unpaid leave isn't fair, especially when you're dealing with life-or-death situations 
. Companies like Brentford FC are showing that we can make a difference by supporting each other in times of need 
. And that's why this whole "Hugh's law" thing is so important - it could really make a huge difference for families in similar situations 
... let's keep pushing for change! 
it's like the system is expecting them to be superheroes or something meanwhile these companies like brentford FC are showing us that you can actually support people in need without breaking the bank 
... 12 weeks of full pay? That's like, a safety net or something 
. I'm so glad that Brentford FC has taken the lead on this and that the government is considering it too