We need to come together and do this

I have something to tell you that you don't know. It's happening right here in the U.K. It's affecting people you might know, and it might even happen to you.?

But this isn't about scaring you – it's about how you and I can actually help solve it for good.??

It all started on the day of my 27th birthday. My phone rang. It was my dad. I thought he was going to wish me a happy birthday, but instead, he was terrified and crying.

A doctor had just told him that my brother André had an aggressive form of blood cancer and that, most likely, he'd need a bone marrow transplant. André was only eleven years old.

Over the next three years, they travelled more than 80 miles every week for treatment. My stepmother needed to be with André all the time, so she left her job. As a result, their income was suddenly cut in half.

We weren't just fighting cancer. We had to take many long trips to the hospital, we didn't have much money, and we were constantly scared of losing André.?

Myo

Years later, I was standing on the bank of the Irrawaddy River in Myanmar.?

I had founded a charity called Please Take Me There, and I was working in collaboration with World Child Cancer, assessing the impact of poor transport infrastructure on cancer outcomes in children.

Myo, a five-year-old girl with leukaemia, was my travelling companion. Her mum was with us. We were making the journey from her home on the outskirts of Yangon to Myanmar's only hospital specialising in paediatric oncology.

Although I could see the hospital from where I stood, the journey would take five hours.?

We trudged through snake-infested wetland. We negotiated bumpy dirt tracks on the back of a motorcycle. We canoed over the fast-flowing river. And we completed the final leg of the journey through downtown Yangon on the back of a crowded van.?

This was all in the sweltering heat, but Myo was to make this journey through monsoon rains and thunderstorms too.

Myo is one of the lucky ones. Children in other parts of Myanmar and across the world never make it to hospital at all. They never get a diagnosis; they never have a chance.

From that day on, Myo never missed her treatment again. Since then, and together with local partners, we've offered more than 5,000 trips to children who live far from the only hospital that can save them.?

Travelling for cancer treatment

I had just returned from Myanmar when I received a report from the UK charity Young Lives vs Cancer.?

As I started reading the report, I realised that the stories were familiar; Children here in the UK travelling far for treatment, families paying the bills to get their children to hospital and getting little or no support.?

Families of children with cancer all over the country were struggling – just like my own family when my brother was diagnosed – and they deserved better.?

I needed to understand the scale of the problem. So, between 2018 and 2019, we ran a pilot project offering transport and financial help to families of children fighting cancer.?

We ran the project for families in the East of England, where on average, a child travels many 90-mile return trips to get treatment.?

But I met families who travelled much further. Families like Esmé's.

Esmé was only one year old when she was diagnosed with a rare brain tumour. She was the youngest child of four. Her mother, Wendy, had been studying to become a counsellor, and her husband, Aaron, was a self-employed painter and decorator.

Esmé's diagnosis shattered their world.?

Aaron gave up work to care for their eldest children. Wendy dropped out of university, so she could be with Esmé in hospital.

In two years, Esmé and Wendy travelled to and from hospital in Cambridge over 200 times. On top of that, Esmé was taken to a local hospital every time she had a fever. So that was another 80 visits.?

In total, Esmé travelled over 14,000 miles to receive medical care. That's three times the distance between the UK and China.?

Esmé's family spent over ￡6,000 on transport just to get to hospital. But, with so many costs adding up, they just about managed to pay their rent.

By day, Wendy and Aaron did the best they could for their children. By night, they sent letters asking for help, applied for grants and organised fundraisers.??

For two years, they lived under stress, worried about their children and their financial situation.?

Mapping the scale of the problem

I wish I could tell you that Esmé's story is unique. But I can't. Here's what's happening.?

In the UK, there are 19 principal treatment centres. Those are hospitals that offer the very best care for children with cancer.

Under the freedom of information act, I wrote to all 19 treatment centres to find out how far each child in their care had to travel.

Then, I analysed data published by the charities Cancer Research UK and Young Lives vs Cancer and crossed referenced it with my findings.

Finally, I asked 100 families affected by childhood cancer to share their experiences of travelling for treatment.

The findings were shocking. Each day, 12 mums and dads like you and me will hear the words "Your child has cancer".?

That's 4,500 children and young people every year potentially facing three problems:

The first is distance – They have to travel to one of the 19 treatment centres around the country, a 60 mile* round trip on average. But you know about averages, right? Some do less, and some do more. By more, I mean 100, 200 miles.?

Here's an example. On the map, the blue shade shows where the children live, and the red shade shows us the hospital they travel to.

I estimate that 65% of children with cancer don't have a principal cancer treatment centre in their county. So they have no other option but to travel.?

Some families travel very far for treatments only available in a couple of hospitals or abroad. They just want to offer their children the best possible care.?

The second problem is money. On average, a family spends nearly ￡200 per month just to pay for transport to hospital.?

And although nearly 70% of families say they need help with transport, only 6% of parents receive financial support from the NHS (*Young Lives vs Cancer, Are We There Yet, 2018)

As a result, travel costs leave many families struggling to pay for food, rent, and bills.?

The third problem is that public transport can be dangerous for a child with cancer.

During treatment, a child's immune system is very vulnerable. That puts them at higher risk of getting a severe infection or catching viruses. So, very often, doctors tell families to avoid it altogether.?

Some children here in the UK travel up to six hours on public transport to access specialised treatment. Unfortunately, they don't have an option.??

Are we nearly there yet?

For many years, the charity Young Lives vs Cancer has been asking the government to help families of children with cancer with a travel fund. The government is yet to act.?

Every day, across the UK, families like yours and mine receive the news no parent wants to hear. And just like that, their lives change.

They rely on friends and family to give them lifts so they can avoid public transport. They rely on loved ones for much-needed funds to cover a long list of costs. And they rely on tolerant employers for time off.?

It has been like that for decades.

Enough is enough. As a country, we need to do better for these families. They are already struggling with a shattering diagnosis of childhood cancer. They deserve a better way.?

A specialist transport service

For years, families of young people with cancer have been telling us that they need three things.

The first one is the financial support from the government to help cover all the costs of travelling long distances to hospital.?

The second is a specialist air transport service, a quick and safe way to travel when they need treatment in other parts of the country or abroad.

We have received so many messages from parents that show us how important this is. One parent told me, "Our son required a bone marrow transplant in Bristol, and we live in Northern Ireland. Air travel would be a lot less stressful than taking the ferry and driving hundreds of miles."

The third request from families is an overland transport service to help them travel to and from hospital. This is a safe and comfortable non-emergency vehicle where parents and children can turn to each other and support each other.?

Making it happen

We aren't waiting for the future to arrive. For thousands of young people with cancer, waiting is never an option.?

First, we are starting a new petition. We are asking the government to create a travel fund for all young cancer patients.?

This is exactly what the charity Young Lives vs Cancer has been asking for many years. And they are right. Each child, each young person, should receive the support they need regardless of how much their parents earn.?

But a travel fund alone won't solve all these problems.?

So, secondly, we need to create a specialist transport service to help families travel to treatment.?

We want to start in the East of England, one of the most affected regions in the country. Then we'll roll it out nationally. We want to give every young person with cancer who needs it free, non-emergency transport to and from hospital.

The overland transport service will mean families no longer have to worry about paying for transport or asking friends and family for a lift.

But we need to do more. So for children who have to travel hundreds of miles across the country or abroad for specialist treatment, we want to provide an air transport service to get them there quickly and safely.?

In 2019, we flew a boy called Sidney from Suffolk to a hospital in Manchester. A few months later, his mum told us, "It was something exciting at a time when there wasn't much to be excited about. It was brilliant. The impact of going to Manchester was hugely reduced because I didn't have to worry about Sidney getting sick or the length or cost of the journey. I was much less stressed, and I could cope with everything better. Also, Sidney got to experience something fun at a really horrible period of his life."?

Our dream is that, by no later than 2026, we can offer an air transport service to children who need it in the UK.??

Isn't that a dream worth fighting for?

Families in this country are suffering because of poor transport to hospital and the financially devastating impact. By coming together, we can help stop this.?

If a child has to travel long distances for treatment, we'll make sure they don't have to pay for it or get there by public transport.

This means they'll spend less time away from their homes, schools, families and friends.

Parents won't need to constantly ask family, friends and neighbours for lifts at all hours of the day and night or find hundreds, if not thousands, of pounds for travel.?

Isn't that a dream worth fighting for?

We need everyone to know about the challenges these families are going through. We need everyone to tell the government enough is enough and to sign the petition.

We need everyone to know that together, we can create the transport service that families need now and for years to come.

We all have the power to choose what happens next.?

Three things you can do to help

1. Please sign our petition. By signing in, you'll be telling our government you care about children with cancer and that they deserve to have access to free travel to and from hospital regardless of their income.

2. Then, share our video or this article with your friends, your family and your colleagues.

3. If you want to help fund our much-needed transport service for children with cancer, please donate what you can. If we all chip in, we can make it happen.

If you want to learn more about the transport problem, I wrote a report available at www.pleasetakemethere.org/report?

We need to come together and do this for them.?

A dream, taken seriously, is the most significant thing known to humanity.

I'm just an ordinary person, a dad and husband. But I'm also a dreamer and a doer.??

I follow my heart, my experience, and what so many mums and dads have told me over the years. And I won't stop until the transport problem is solved. But I can only do it if we all get together.?

?It's all for these children and young people who will be our future scientists, teachers, doctors and change-makers.?

We need to come together and do this for them.?

And with your help, I know we will.?