It’s Never You

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It’s Never You Two parents who lost a child. Fighting the system to change it. ⚡️



Charity supporing families of seriously ill children.

What happens when the child you’ve brought into the world is fighting to stay in it? Today, the Government announced str...
22/10/2026

What happens when the child you’ve brought into the world is fighting to stay in it? Today, the Government announced stronger employment protections for pregnant women and new parents, extending safeguards to families taking adoption, shared parental, neonatal care and bereaved partner’s paternity leave.

This is genuinely welcome news. Families need security and protection at some of the most important moments in their lives.

But there’s another group of parents who desperately need that same security. Parents whose children are diagnosed with cancer or other serious illnesses.

When days in hospital become weeks, and weeks become months. When being at your child’s bedside matters more than anything else in the world.

These parents aren’t choosing to stop working.

They’re simply choosing to be there for their child.

That’s my son Hugh in the photograph. We lived this reality, and I know thousands of other families are living it today.

If we recognise the importance of protecting parents when they bring a child into the world, surely we can extend that same compassion to those fighting to keep their child in it.

That’s what Hugh’s Law is about.

12 weeks of protected leave and financial support for parents of seriously ill children.

Today’s announcement is an important step forward for working families. Let’s make sure the families facing the unimaginable aren’t left behind.

50 days ago, my 8-year-old son took his big brother to UK Prime Minister 🦋 Not in person, but as a little butterfly he ...
22/10/2026

50 days ago, my 8-year-old son took his big brother to UK Prime Minister 🦋 Not in person, but as a little butterfly he drew on an envelope.

When our six-year-old son Hugh died, nobody told us how to explain to Raife that his big brother wasn’t coming home.

So we told him Hugh had become a butterfly. Ever since, butterflies have been his way of keeping Hugh close.

On 2nd September, Raife bravely delivered a letter to the Prime Minister Andy Burnham .

He’s spent years watching his mum and dad fight tooth and nail for families caring for seriously ill children, whilst we’ve tried our hardest to give him and his younger brother the childhood they deserve.

It hasn’t always been easy. But we’ve never stopped trying. 50 days later, he’s still waiting for a reply.

Prime Minister, I’m asking you personally to meet with us. Not for a photograph or publicity, but to hear Hugh’s story and discuss Hugh’s Law.

Imagine what it would mean to thousands of parents sitting beside hospital beds tonight to know their Prime Minister was prepared to listen. Raife has already lost more than any little boy should.

I’d love to tell my son that his courage made a difference. That the little butterfly he carried to your door was heard. 🦋

This was Hugh’s radiotherapy treatment plan. 16 days of radiotherapy. Every morning, another journey to hospital. A 120-...
21/10/2026

This was Hugh’s radiotherapy treatment plan. 16 days of radiotherapy. Every morning, another journey to hospital. A 120-mile round trip. Two weeks away from work. Hundreds of miles on the road.

And behind every appointment was the same overwhelming fear and anxiety. Thinking over and over again, please, please let this work.

That piece of paper might look like a list of appointments. But for us, it was our entire world. We weren’t thinking about work, money or how we were going to pay the bills. We were thinking about keeping our little boy alive. I would have quite happily taken him to Mars every day if I needed to.

But the reality is, those worries don’t disappear just because your child has cancer. So what are parents supposed to do?

How do you keep earning? How do you pay your mortgage? How do you hold yourself together mentally when every day is filled with fear?

And how are you supposed to turn up for work when the only place you want to be is beside your child?

Parents shouldn’t have to fight to save their child’s life while fighting to protect their family’s livelihood. This is the reality behind Hugh’s Law. And it’s a reality thousands of families know only too well.

www.hughslaw.uk

A really positive day in Wales today. I had the opportunity to meet with the Welsh Government’s Health Minister Mabon ap...
21/10/2026

A really positive day in Wales today. I had the opportunity to meet with the Welsh Government’s Health Minister Mabon ap Gwynfor to discuss Hugh’s Report, Hugh’s Law, the wider campaigns we are working on at It’s Never You Charity, and, importantly, my own lived experience as a dad.

We talked about the challenges families face when their child becomes seriously ill, from the impact on parental mental health and wellbeing to the financial pressures and lack of support that can turn an already devastating situation into something even harder.

What encouraged me most was the opportunity to turn these conversations into something tangible.

There is a real opportunity to achieve meaningful, lasting change for families across Wales, and that would be a tremendous achievement.

For me, this has always been about taking what we experienced as a family and using it to make things better for those who come after us.

Lots of work still to do, but today felt like another important step forward.

Progress matters. But turning progress into real change matters even more.

Welsh Parliament

This is what life looks like when your child is seriously ill. Not for a night or two, but for weeks, sometimes months, ...
20/10/2026

This is what life looks like when your child is seriously ill. Not for a night or two, but for weeks, sometimes months, with no idea when you’ll get to go home.

A parent sent me this photograph a while ago. And only those who have lived it will understand that this setup is actually a luxury.

The days are long. The nights even longer. There never seems to be enough good news. And when it does come, you’re almost too frightened to believe it, because you know how quickly everything can change.

You live in a constant cycle of fear, hope and anxiety. The outside world carries on. People go to work, make plans, go on holiday and live their lives.

But your entire world has become this room. The machines. The observations. The doctors’ rounds. The footsteps approaching your child’s bed.

You live from one blood result to the next. One scan to the next. One conversation to the next. And somehow, after a while, this becomes your normal.

I look at this photograph and I don’t just see a hospital room.

I see a mum or dad who would give absolutely anything to swap places with their child. I see the exhaustion, the fear, the love and the desperate hope that tomorrow might be better than today.

Because when your child is seriously ill, nothing outside those four walls really matters anymore. You just want to be there.

And more than anything in the world, you just want to take them home… well and sadly in some situations, alive 🙏💔❤️

Another significant week for It’s Never You, with three important meetings focused on improving support for families acr...
18/10/2026

Another significant week for It’s Never You, with three important meetings focused on improving support for families across the UK. Here are 3 things we did this week to help parents of seriously ill children. ❤️

🏥 Cambridge Children’s Hospital

We met with the team behind the new hospital to hear about their ambitious plans for the future and discuss how we can work together to improve support for parents and families.

Some exciting conversations, with more to share soon!

🏛️ Department for Work and Pensions

We met with Sir Stephen Timms to discuss the compassionate transition of Disability Living Allowance (DLA) following the death of a child.

No grieving parent should face additional financial hardship and unnecessary bureaucracy at the worst possible time.

🏛️ Department of Health and Social Care

We met with the Health Secretary, Yvette Cooper, to discuss Hugh’s Law, Hugh’s Report, parental mental health and the urgent need for better practical, emotional and financial support for families of seriously ill children.

Three meetings. Three opportunities to create lasting change. One mission. To ensure no parent has to choose between their child and their job, struggle financially or face a family crisis without the support they deserve.

We’re encouraged by the conversations, but meetings alone don’t change lives. Action does.

And we’re only just getting started. ❤️

Today we went to see Nick Cope . A lovely morning, full of music, laughter and children singing their hearts out. And th...
18/10/2026

Today we went to see Nick Cope . A lovely morning, full of music, laughter and children singing their hearts out. And then came a song called “Have You Heard About Hugh?”

It’s about a little hedgehog called Hugh who gets separated from his parents. They think they’ve lost him forever.

But in the song, Hugh comes home.

And suddenly, something as simple as a children’s song becomes incredibly difficult to listen to.

The whole theatre was singing Hugh’s name.

Hugh would have absolutely loved it.

That’s one of the strange things about grief. You can be having the loveliest day, surrounded by happiness, and suddenly something reminds you of everything you’re missing.

A name. A song. A moment you wish they were there to share.

And there’s no warning.

But today also reminded me of something else. We can’t spend our lives avoiding every song, every place or every memory that might hurt.

Because if we did, we’d miss so much of the life that’s still happening around us. Grief puts roadblocks everywhere.

But sometimes, you just have to get up and dance all over them. ❤️ And I think Hugh would have liked that. x

There are so many things we wish we could say to the people we have lost. Sometimes it’s something we never got the chan...
17/10/2026

There are so many things we wish we could say to the people we have lost. Sometimes it’s something we never got the chance to say. Sometimes it’s simply “I love you” one more time.

I’d love to fill these comments with messages to the people we miss. If you feel comfortable, leave yours below 👇❤️ ✍️

And please share this so others have the chance to leave their message too. You never know who might need this today.

Today, I decided to charge up Hugh’s iPad for the first time in five years. Five years since I put it in a drawer, unabl...
16/10/2026

Today, I decided to charge up Hugh’s iPad for the first time in five years. Five years since I put it in a drawer, unable to bring myself to look through it.

And then I found this photo. One I’d never seen before. Hugh must have taken them off himself by accident.

For anyone who has lost someone they love, you’ll understand just how precious this is.

Finding a photograph you’ve never seen before is better than any present you could ever receive.

Because when you lose someone, you know there will be no more new photographs. No more new moments to capture. Everything you have is everything you’ll ever have.

And then, out of nowhere, you find something new. A new photograph of someone you’ll never get to see again. A new memory to treasure. A little piece of them you didn’t know you still had.

A new bit of love, five years later ❤️

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