The widower of the BBC's first female director of television Jana Bennett is spearheading a campaign demanding action to tackle the rare aggressive brain cancer that killed her.
Journalist and former BBC executive Richard Clemmow is campaigning with charity OurBrainBank in his late wife's memory.
He said: “Glioblastoma has been consistently overlooked by those in charge of the NHS at all levels. It’s a scandal.
"Whilst huge advances have been made in treatment of more common cancers, the situation for people diagnosed with glioblastoma hasn’t changed in 20 years.
"We should hold politicians and those in healthcare to account.”
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The group is to publish a white paper at the British Neuro-Oncology Society conference on Wednesday, identifying five vital steps the Government should take immediately to improve the situation for GBM patients and their loved ones.
The disease, which Richard described as 'very frightening', also killed The Wanted star Tom Parker aged 33 recently, as well as Joe Biden’s son Beau and former US senator John McCain.
Richard said: “Jana had just left a job in New York running a TV channel and started out working as a consultant for a new media company and she had just done her first trip to the US in that new role, flying from London to San Francisco and then a few days later to New York.
“She rang me up and said, I do not know what is going wrong, I can’t cope with the time zones. Then in New York she said, I’m on a subway and I have just done the same loop twice - which was worrying as she knows it well.
"Her left foot was scuffing the sidewalk and a friend commented that she seemed to be limping
"Friends also started telling me, there is something wrong."
The family was concerned but thought, at worst, she needed to be checked out urgently for a mini stroke.
Richard, from Chinnor, said: “When I went to pick her up at Heathrow she looked dreadful. Her posture and gait weren't symmetrical and she was dragging her left foot.
"We went straight to the JR A&E department – that was lunchtime - and by that evening they said she had a brain tumour.
"It was something that you never imagine happening."
Jana had an operation to remove the tumour eight days later and was then under the care of an oncologist at the Churchill Hospital.
“But little over a year later, the tumour came back,” said Richard.
The family endlessly researched pioneering treatments, moving to a London hospital and even travelling to Germany during Covid for treatment.
"That probably helped her," said Richard. "It extended her reasonable quality of life for a bit.”
But Jana went into decline in late 2021 and died at home in early 2022, aged 66, approaching three years after her diagnosis.
Richard said: “Having gone through the process with Jana and my two kids we have seen what it is to face this very frightening disease.
"We have seen what is on offer in this country through the NHS and this campaign is because we want to try to move things forward.
“There has been a lack of research for a number of reasons. There’s less in it for the pharmaceutical companies and it is regarded as too difficult to treat really.
"The average survival time from diagnosis to death is just 14 months, so they say just go out and live your life as best you can.
“The protocol is take out the tumour then radiotherapy and chemotherapy, and that has not changed in 20 years and it does not work.
"It prolongs life by a little bit but it does not challenge the cancer itself."
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OurBrainBank is demanding that UK GBM patients do not miss out on the benefits of the personalised cancer treatment built on recent advances in genomics, the science of cancer genetics.
It wants to see universal frozen tissue storage, necessary for genomic sequencing of a tumour, universal genomic sequencing for all GBM patients, an increase in UK drug trials for GBM and priority funding for research that promises early transition to becoming a treatment.
Richard said: “How are we coping without Jana? That’s not a question that’s easy to answer. Our lives have changed in a way that we never expected and it’s so hard not to have Jana in our lives.
“All three of us, myself and my two children, are working in ways to help other people facing this terrifying diagnosis.
“We will continue campaigning until we feel that this type of cancer is given greater recognition by those in power.”
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