Parents of children living with brain tumours met with MPs, urging them to prioritise the disease, invest in research and increase access to clinical trials to change the story for families affected by the disease.
Jackie Hall’s 14-year-old son Max is living with a grade 4 diffuse glioma – a rare and very aggressive type of tumour most often occurring in children. Faced with extremely limited treatment options in the UK, his family has raised more than £40,000 to access immunotherapy treatment in Germany.
Jackie said: “The hardest part for me, as his mum, is not being able to fix him. All you want to do is make your child better, and you can’t. That feeling is crushing.”
In a meeting organised and attended by Brain Tumour Research on Monday 8th June, Jackie shared Max’s story with Lee Baron, MP for Corby and East Northamptonshire,
Max’s story is devastating, and it is heartbreaking to hear Jackie share the journey that Max’s family have been through. Jackie highlighted the need for more clinical trials in the UK – currently there is only one clinical trial in the UK recruiting paediatric brain tumour patients, and access is limited to those with a specific type of tumour. Jackie echoed our calls for greater Government investment in research to move promising discoveries into clinical use more quickly, so that patients in the UK can benefit from innovative treatments.
Recognising the urgent need for policy change, Lee Barron MP made assurances of putting cancer research at the forefront of national health plans, saying: “Following this week's introductory meeting with Brain Tumour Research and my constituent, Jackie Hall whose 14-year-old son, Max, has brain cancer, I am more committed than ever to securing better outcomes for brain tumour patients.
“There is a clear need for a stronger research environment that supports greater innovation, breakthrough discoveries, and increased investment in research. This is an issue that I will push with colleagues from across the House to ensure that research into brain tumours receives the attention and support it deserves.
“I look forward to continuing to work closely with Brain Tumour Research and Jackie Hall to champion this cause and to do everything I can as an MP to advocate for improved outcomes and greater hope for patients and their families.”
For Tina Smith, the opportunity to meet with her MP, Iain Duncan-Smith on Friday 12th June was a “valuable” chance to explain how gruelling brain tumour treatments have impacted her daughter Connie’s life.
Connie was just 11 when she was diagnosed with a grade 4 medulloblastoma in September 2022. She underwent 10 months of treatment as part of a trial which included chemotherapy and radiotherapy. Connie now has scans every six months and the family lives with the knowledge that her tumour could come back.
“It's a dark shadow hanging over us that won’t ever go away. The chance to meet with Iain Duncan-Smith is so valuable because current treatments for paediatric brain tumours can be gruelling and have challenging side effects that can significantly impact quality of life. I was really shocked to learn that not much has changed with treatment for several decades. More Government money is needed to drive innovation in research into brain tumours and ensure wider access to clinical trials to improve outcomes and give hope to people like Connie,” said Tina (pictured top, centre with Iain Duncan Smith MP).
Your stories are extremely powerful. They prove why our campaigning for more investment in research into brain tumours and increased access to clinical trials remains so important.
Building a strong network of political supporters will help us achieve our aims. You can help us by engaging with your MP and sharing why the brain tumour community desperately needs change. Find out more about campaigning with us.
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