It’s Never You

It’s Never You 𝗣𝗮𝗿𝗲𝗻𝘁𝘀 𝗗𝗲𝘀𝗲𝗿𝘃𝗲 𝗕𝗲𝘁𝘁𝗲𝗿
Supporting families of seriously ill children.

Campaigning for 𝗛𝘂𝗴𝗵’𝘀 𝗟𝗮𝘄 🇬🇧 & reform across Parliament 🤝 Financial, emotional & mental health support for parents and siblings

5 years on, we remember Hugh. 🦋 Join us at The Shire London on Friday 18th September for a special day of golf, remember...
24/08/2026

5 years on, we remember Hugh. 🦋 Join us at The Shire London on Friday 18th September for a special day of golf, remembering Hugh and raising money for It’s Never You.

⛳ £429 per team
🍳 Full English breakfast
🔥 BBQ after golf
🏆 Some great prizes to be won

Most importantly, every penny raised will help It’s Never You continue supporting parents and families when they need it most.

Come and play, remember Hugh with us, and help us make a difference in his name. 💜

To enter a team, get in touch, DM or email [email protected]

24/08/2026

The new Prime Minister, .burnham , wants to give people breathing space.

Hugh’s Law is about giving parents of seriously and terminally ill children that same space — space to breathe and, when the worst happens, space to grieve.

Right now, too many parents are expected to worry about work, bills and finances while sitting beside a seriously ill child.

That needs to change.

The Government consultation on Hugh’s Law closes in just 7 days.

If you believe families deserve better, please take a few minutes to have your say.

Link in bio | hughslaw.uk

7 days. One opportunity to make sure parents are heard.

🚨THE CONSULTATION CLOSES IN 7 DAYS 🚨 The Government consultation on paid leave and support for parents of seriously ill ...
23/08/2026

🚨THE CONSULTATION CLOSES IN 7 DAYS 🚨 The Government consultation on paid leave and support for parents of seriously ill children ( Hugh’s Law ) is now open and closes on 1st September.

This is your chance to help shape the future for thousands of families across the UK. Whether you’ve experienced childhood illness yourself, know someone who has, or simply believe no parent should have to choose between caring for their child and paying the bills, please take a few minutes to respond.

Every response matters. Every voice counts.

Please complete the consultation and share this post so we can reach as many people as possible.

Together, we can create lasting change for every family who faces the unimaginable.

You can find links to the consultation and our consultation guide at www.hughslaw.uk or follow the link in the bio for the consultation ✍️

Not sure how to answer , take a look at our guide 👉https://static1.squarespace.com/static/688207e2041b786ae3fdc03f/t/6a43ea51c8045573c8f0eed7/1782835794006/Hugh%27s+Law+Consultation+Document.pdf

In August 2021, Hugh had a CT scan. This photo was taken the following day. The scan wasn’t clear. The imaging was fuzzy...
21/08/2026

In August 2021, Hugh had a CT scan. This photo was taken the following day. The scan wasn’t clear. The imaging was fuzzy.

What we now know is that Hugh had already relapsed at the time of that scan. By the time this picture was taken, the disease had returned.

Hugh had a high-risk cancer with a significant risk of relapse. Yet despite the imaging being inconclusive, we were never offered the opportunity to rescan him within a short timeframe, with the uncertainty, risks and options properly explained to us.

Had we been given that choice, we would have rescanned Hugh.

Six weeks later, Hugh died.

I’m not saying an earlier scan would have saved Hugh’s life. It wouldn’t have. But it may have given us longer with him.

Had we known his cancer had returned, decisions could have been made differently. Treatment options could have been considered sooner. And perhaps most importantly, we would have known just how precious and short the time we had left with our son was.

Those extra days or weeks would have meant everything to us.

This isn’t about parents overriding doctors or making clinical decisions themselves. It is about shared decision-making when there is uncertainty.

The principle already exists within the NHS: clinical expertise about the options, risks and benefits should be brought together with the circumstances and preferences of the patient and their family.

That is why, working with our MP Chris Hinchliff MP, we have tabled an amendment to the Health Bill to ensure that when imaging is inconclusive in a child at significant risk of relapse, parents are given the options and involved in what happens next.

If a scan is inconclusive, tell the parents. Explain what is uncertain. Explain the risks of waiting. Explain whether rescanning sooner is an option.

Then make that decision with the family.

We weren’t given that opportunity with Hugh. Nothing will give us those weeks back.

But Hugh’s experience can change what happens for the next child and the next family.

Parents deserve to know the options. And they deserve a voice in the decision. The right to choose.

As we enter September , Childhood Cancer Awareness Month, this is what we want for every parent facing the unimaginable....
20/08/2026

As we enter September , Childhood Cancer Awareness Month, this is what we want for every parent facing the unimaginable.

Space to breathe. Time to grieve.

When your child is seriously ill, life doesn’t stop. The bills don’t stop. Work doesn’t stop. The forms, appointments and responsibilities don’t stop.

But parents need space.

Space to be beside their child without worrying about losing their income or their job.

Space to look after their own mental health before they reach breaking point.

And when the unimaginable happens, time to grieve without being forced immediately back into everyday life.

This September, we are going to keep pushing for the changes families have been asking for for far too long.

Because supporting the child must also mean supporting the family.

20/08/2026

If you are hosting a golf day, corporate event or fundraiser this September, please consider It's Never You Charity as your charity partner.

We are turning the page on how parents of seriously ill children are supported.

Not waiting until families reach breaking point.
Not accepting that parents should simply have to cope.

We’re putting practical support in place when families need it most:

• Providing parents with access to professional counselling within 7 days
• Offering vouchers and practical support to families in hospital
• Giving parents a voice when they feel unheard
• And, most importantly, driving the national change that families have needed for far too long

September is Childhood Cancer Awareness Month, and every golf day, dinner, event or fundraiser that chooses to support us helps us reach another family and gives us greater strength to keep pushing for change.

We’re not just raising money. We’re changing what happens to parents when their child becomes seriously ill.

If you’re organising an event this September and would like to make It’s Never You your charity partner, please DM me or email [email protected].

Every event. Every donation. Every introduction. It all helps us turn the page.

To some, this is just a bear. To us, it’s one of the last things we have that was Hugh’s. I bought it for him on his 4th...
19/08/2026

To some, this is just a bear. To us, it’s one of the last things we have that was Hugh’s. I bought it for him on his 4th birthday at Brent Cross.

When we laid Hugh to rest, we put his favourite teddies and toys with him. It was our final act as his parents making sure he had the things he loved with him.

This bear stayed with us. And it still comes with us when we go away.

I don’t think there’s anything strange about that. When you lose your child, you find your own ways of keeping them part of your life. You carry their name, their memories and sometimes their things with you.

I’ve carried Hugh’s shoes across finish lines. I’ve carried his story into Parliament and Government. And I’ll keep carrying his name wherever this journey takes me.

Next April, it’ll be this bear’s turn.

It’s going somewhere special. Because moving forward has never meant leaving Hugh behind.

For those who have lost someone, what do you take with you? What’s that one thing that might mean nothing to anyone else, but means everything to you?

In two weeks, Frances, Hugh’s younger brother and I will walk through the doors of UK Prime Minister Street to launch ou...
18/08/2026

In two weeks, Frances, Hugh’s younger brother and I will walk through the doors of UK Prime Minister Street to launch our campaign: How to Fix Britain’s Broken Parents.

We will do it as Childhood Cancer Awareness Month begins, and in the month that marks five years since Hugh died.

We’re going to Downing Street to ask a simple question:

Why do we wait for parents to break before we help them?

When a child is diagnosed with a serious or life-threatening illness, the impact doesn’t stop with that child.

Parents can lose their income. Their mental health can deteriorate. Siblings can become the forgotten children. Families are expected to navigate benefits, employment, hospitals, bills and unimaginable uncertainty while trying to hold themselves together.

We know this.

So why is so much of our system still designed to intervene after families reach crisis point?

On 2nd September, we will take the voices and experiences of families say to us and The Parent Alliance UK to the heart of Government and set out what needs to change.

Earlier intervention.
Better mental health support.
Financial protection.
Support for siblings.
And a system that recognises the whole family from the moment a child is diagnosed.

Five years without Hugh.

Everything we have done since has been about making sure what happened to him and what happened to our family was never for nothing.

Now we take the next step. It’s time to fix Britain’s broken parents.

You have no idea of the emotions inside me when I saw this yesterday morning on Good Morning Britain.What a moment.Every...
15/08/2026

You have no idea of the emotions inside me when I saw this yesterday morning on Good Morning Britain.

What a moment.

Every single day, I’ve pushed against the barriers put in front of me. I’ve never taken no for an answer.

I’ve had Ministers tell me, “You don’t know what no means.” I’ve had charities and MPs tell me I’ve disrupted the status quo.

But when you know why you’re doing it, and more importantly who you’re doing it for, then who cares?

Because I know how much this work can help families and how much it can change. And for me, there’s something even deeper behind it all.

Knowing that everything Hugh went through, everything our family went through, was not for nothing. That his life and his story are creating change that will help other families when they need it most.

I get asked in almost every interview: “What do you think Hugh would say to you now?”

Who knows.

But knowing the boy he was, he’d say “Keep going, Dad.” 💪❤️ And I will.

15/08/2026

It’s not just the pressure of having a seriously ill child that makes parents vulnerable. It’s the guilt too.

The guilt of being beside one child in hospital while knowing your other children are at home without you.

The guilt of missing bedtimes, school runs, weekends and ordinary family moments. Of wondering whether they feel forgotten. Whether they understand why you’re not there. Whether what is happening to their brother or sister is changing them in ways you can’t yet see.

As a parent, you’re constantly being pulled in two directions, desperately wanting to be there for the child who is ill, while desperately wanting to protect the children who are living through it alongside them.

And that stays with you.

That’s why I’m so proud that the Department of Health and Social Care - DHSC within Hugh’s Report will, for the first time, look specifically at the impact a child’s diagnosis has on their siblings recognising their needs in their own right.

Because when a child becomes seriously ill, the diagnosis doesn’t happen to one person. It happens to the whole family.

And if we want to properly support parents, we also have to understand what is happening to the children they are so desperately worried about leaving behind.

Address

Cambridge
CB2 0QQ

Website

,

Alerts

Be the first to know and let us send you an email when It’s Never You posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Contact The Organisation

Send a message to It’s Never You:

Shortcuts

Share

Category