Parents of Luton's Amani and Barton-le-Clay's 'Gorgeous' George welcome report demanding action on brain tumours

Two sets of parents from Bedfordshire who lost their children to brain tumours have welcomed a new report demanding urgent action to help those affected by the devastating disease.

In its report, Pathway to a Cure – Breaking Down the Barriers, The All-Party Parliamentary Group on Brain Tumours (APPBGT) calls for wide-ranging changes in how research into the disease is funded.

The report, published on February 28 on the eve of national Brain Tumour Awareness Month, was launched at a Westminster reception hosted by the charity Brain Tumour Research and the Tessa Jowell Brain Cancer Mission.

It calls out the current funding system as unfit for purpose and claims patients and families continue to be let down, while millions of pounds of promised investment has not materialised.

Among those welcoming the report were Louise and Matt Fox, from Barton-le-Clay. Their son, George, underwent multiple brain surgeries, as well as chemotherapy and radiotherapy. He even travelled to Germany and America for treatment. George died in April 2022, 11 months after being diagnosed with a glioblastoma (GBM).

Louise said: “We lost our brave, inspiring son George at the age of 13 to GBM and simply cannot understand why, in this day and age, so few treatment options are available for this horrific disease.”

She added: “We fought for George as hard as we could. Now, despite our loss, we continue to fight in the hope it will help other families in the future.

“We are activists in a world we never wanted to be part of because it is what George would have wanted.”

Yasmin Stannard and Khuram Liaquat, from Luton, also welcomed the findings. Their daughter, Amani, was diagnosed with a GBM after collapsing in April 2020.

After NHS care failed to stop the growth of her tumour, Amani’s family decided to source life-prolonging treatment from Germany. Sadly, she died in February 2022.

Yasmin said: “Despite being told she had just 12 to 18 months to live after receiving her brain cancer diagnosis, our brave daughter, Amani, campaigned to raise awareness about the lack of funding into brain tumour research.

“It has been one year now since we lost our daughter at the age of 23 and we continue to fight in her name.”

Derek Thomas MP, who chairs the APPGBT, said: “A total of £40 million in investment has been promised since 2018. However, our investigations have revealed a concerning lack of deployment of these funds with just £15 million reaching the hands of researchers in the five years since it was promised.

“We are hearing that the current system is too complicated, it doesn’t connect laboratory work with what is happening in clinics, that there is no up-to-date and robust database for people to understand if they could be eligible for clinical trials and that far too little of the money previously promised has reached the hands of the researchers who can make a difference.

“The sad fact is that brain tumour patients do not have the luxury of time. The government must act now in order to recognise brain tumour research as a critical priority, appoint a champion, and ringfence sufficient funds to make a difference.”