Neuroblastoma UK statement about debate in House of Commons on childhood cancer outcomes

Neuroblastoma UK, a charity that funds research into neuroblastoma, a rare and often aggressive childhood cancer, welcomes the debate in the House of Commons today (26 April) on childhood cancer outcomes. There is an urgent need for more research funding into childhood cancers, particularly neuroblastoma, to improve diagnosis, treatment and survival rates. 

Around 100 children are diagnosed with neuroblastoma every year in the UK. This represents around 6% of all childhood cancer diagnoses. Symptoms can be vague and are often mistaken for common childhood illnesses. Children are treated with incredibly intensive drugs and invasive procedures that can leave them with lifelong disabilities. And because they have an increased risk of relapse, the long term outcome of these children desperately needs to be improved. 

Neuroblastoma UK has funded nearly £9 million of neuroblastoma research over the last 40 years.  Yet despite our very best efforts, research into neuroblastoma remains under-funded in the UK.  There’s been some progress with developing treatment but only one new drug has been developed for children receiving front line neuroblastoma therapy since the 1980s. And whilst children with high-risk neuroblastoma have a much better outlook than they did 40 years ago, more significant and dedicated investment is desperately needed to make breakthroughs in the diagnosis and treatment of neuroblastoma. 

There has never been a debate in improving childhood cancer outcomes in the House of Commons. We thank Dame Caroline Dinenage MP for her support of the childhood cancer community, and for bringing this vitally important topic forward for debate. We look forward to hearing the outcome and hope that it will enable the Secretary of State to progress positive change in raising awareness of childhood cancer and providing vital research funding.

Update: Our response to the debate

Dame Caroline Dinenage MP held this debate in honour of Sophie Fairall

The debate was held in honour of Sophie Fairall.

We welcome the call for a Childhood Cancer Mission to change our approach to childhood cancer.

Caroline Dinenage MP for Gosport called for a mission which would include

• childhood cancer training for health care professionals

• national referral guidelines specifically for children and

• education campaign for parents on signs and symptoms

More significant and dedicated investment is desperately needed to make breakthroughs in the treatment and diagnosis of neuroblastoma.

Georgia and her dog Bertie

Anthony Browne MP (South Cambridgeshire, Conservative) spoke about Georgia Morris, who sadly passed away in 2016, at the age of 12. She had been diagnosed with neuroblastoma when she was nine years old.

Browne said, “I know that finding cures is painstakingly time consuming and expensive. Charities cannot do it on their own, and it is essential that Governments do more to support research into cancers that take lives so young.

“...we need a national mission for childhood cancer. It is certain that in time a cure for neuroblastoma will be found. It will be too late for Georgia, but not for other children. The more research we do now, the more young lives will be saved. We must do all we can to ensure that innocent children no longer have to go through what Georgia and her parents and family went through. “

We are very grateful to Anthony Browne for raising this issue on behalf of Georgia and all families affected by neuroblastoma.

Around 4% of cancer research funding is directed to childhood cancers. It is imperative that the outcomes of this debate are progressed and we look forward to learning more about the plan and urgently needed delivery of a Childhood Cancer Mission.

We will continue to work closely with researchers across the globe, collaborate with other charities to enable more funding for research and work with families affected by neuroblastoma to raise awareness of neuroblastoma.

Help fund future research

Help fill our virtual research lab* with vital equipment

As part of our 40th anniversary, we want to raise £40,000 to help fund future research that hopes to develop new, kinder treatment for children like Georgia.

Help us reach our target and donate today to help fill our virtual lab* with essential research equipment.

Or text FORTY followed by your donation to 70085** (Text FORTY40, FORTY20, FORTY10 to donate £40, £20, £10)

* Your donations could help fund laboratory equipment in addition to researcher salaries, supplies or other costs associated with a research study. However your donation is unrestricted and may not always go directly to research.

**Texts charged at standard network rate plus your donation. We will not collect or share your personal data so you will not hear from us by phone or SMS. 16+ users only.