Glioblastoma multiforme is a brain cancer nicknamed "The Terminator" because its so deadly. The Sunday Times talks to @shitscaredmum about her new fight launching this week for improved NHS care for the cancer that took her daughter's life 1/4https://t.co/TkyNQH85Y0
‘They hope we’ll go away’: mother still battling for bespoke brain tumour care.
Shaun Lintern, Health Editor
Sunday July 02 2023, The Sunday Times
When her daughter Laura was diagnosed with a brain tumour, Nicola Nuttall did what any mother would do and began searching the internet for everything she could find out about what doctors had told her was a glioblastoma multiforme.
She learnt it had its own nickname — the Terminator — because it was so deadly.
“I was sure there was something we could do. Then you start to do the research and you realise there’s nothing. You really don’t want to look up the cancer your daughter has just been diagnosed with and find out that’s what its nickname is.”
Laura died in May, aged 23, five years after her diagnosis, and now her mother is leading a campaign by the charity OurBrainBank to demand better NHS care for glioblastoma (GBM) patients.
This week Nuttall, 53, will travel to the British Neuro-oncology Society conference in Manchester with other families to unveil a report by the charity that reveals the NHS is failing to hit government targets to genetically sequence rare tumours to help deliver personalised care. In the UK, about 3,200 cases of glioblastoma are diagnosed a year. Although it is classed as a rare disease, it is the most common brain tumour in adults. The median survival time from diagnosis is 14 months.
GBM can have multiple mutations but without genome sequencing there is no chance of personalised treatments. Sufferers are obliged to raise hundreds of thousands of pounds to have it carried out abroad. According to data from NHS England, only 61 patients with GBM had received whole genome sequencing by January this year, just 1.3 per cent of patients.
In 2018, Matt Hancock, then health secretary, promised five million genomes would be mapped within five years, but OurBrainBank says that by December last year only 556,000 tests for cancer had been performed. So far only 10 per cent of the targeted genome sequences has been completed.
Many hospitals lack the facilities to freeze the tumour tissue for genetic testing and the charity is demanding this be made available in all trusts, along with universal genome sequencing. It is also demanding better information on the NHS website and an increase in drug trials to treat GBM.
“We feel we’re making huge progress with cancer and we are at the forefront of research, and making huge leaps forward on things like breast cancer,” Nuttall said. “But nothing has changed in decades in the treatment for this cancer. It’s surgery, radiotherapy and one type of chemotherapy. That’s it. Personalised medicine is the only way to treat cancers as complex as this. You need to understand what drives the cancer to grow. Our children deserve better and this cancer destroys families.”
Last month, Baroness McDonagh, the first female general secretary of the Labour Party, died aged 61 from glioblastoma. In March, her sister, the Labour MP Siobhain McDonagh, said the treatment of GBM patients by the NHS was “a complete and utter national scandal”. Baroness Jowell, another Labour peer, died in 2018 from the same cancer.
Nuttall said only about £10 million of the £40 million pledged by the government had been spent. She said: “It really just feels like we’re just a cancer in the corner that they hope will go away and be quiet, but w It comes as the National Cancer Research Institute announced it is to close. Established in 2001, it aims to improve cancer outcomes by identifying gaps in research and bringing together clinicians, patients, industry and charities to target funding. It also runs the UK cancer research database of clinical trials. Lawrence Young, professor of molecular oncology at the University of Warwick, said: “This is shocking news that will significantly impact cancer research and the development of new treatments in the UK.”
Before her death, Laura completed a bucket list of achievements including meeting Michelle Obama and commanding a Royal Navy warship. Nuttall is now channelling her daughter’s activism, saying: “The best legacy I could ever give to Laura is that no one else has to go through what we’ve been through.” https://www.ourbrainbank.org/use-your-brains/
