The cancer which led to the death of campaigner Laura Nuttall is being “neglected” and treated as “the cancer in the corner”, her mother has said.
Nicola Nuttall said her daughter would be “marching on the House of Commons” if she was still alive, demanding improvements for the care of people with glioblastoma multiforme.
Her daughter died in May, aged just 23, after years of campaigning and raising awareness of the rare and aggressive brain cancer.
Mrs Nuttall called for a number of improvements in care, including genome sequencing of brain tumours and more information for those affected by the disease.
She is backing a new report by the charity OurBrainBank which states that glioblastoma is being “neglected” by the healthcare system and that it is not getting the same level of research as other cancers.
She said that families should be able to access more information about the disease to be included on the NHS website – currently just listed as a “malignant tumour” on nhs.uk – and that newly diagnosed people are coming to her when they cannot find information online.
“I don’t have any medical training but they’re coming to me and asking me for advice and support, and I’m happy to give it, but it’s really poor that somebody that runs an indoor play centre is seen as an expert in glioblastoma,” she told the PA news agency.
“Every time I get an email that says ‘I’m sorry for contacting you, could you give me some advice’, my heart just sinks because it’s another family that are looking for a miracle where there really aren’t any.”
The report also calls for whole genome sequencing for everybody that has a brain tumour removed in surgery.
“When that tumour is removed the actual tissue that’s removed is like gold dust,” Mrs Nuttall said.
“You can use it for genomic sequencing so you can identify exactly what that tumour was made up of.
“And in the long term gives (scientists) the option of using frozen tissue to make a vaccine which is looking like quite promising treatments for glioblastoma.”
She added: “So it’s really important that something that could be seen as just medical waste is actually treated properly and used as a resource going forward.
“And once we know what the mutations are, then there’s the option to develop novel drug treatments. But at the moment there is one kind of chemotherapy and that’s all that’s given to people with glioblastoma, and it may well work for a period of time for some people, but we really do need personalised medicine as is available in other kinds of cancers.
“It just feels like this one is really neglected.
“I know it’s a hard one, I know the prognosis is really low, but we can change that by putting some effort into it.
“And you know, if you go on the NHS website and put ‘glioblastoma’ in, you’ll just get a page on malignant tumours, you won’t actually find any specific information on it.
“So it really does feel like it’s kind of the cancer in the corner that nobody is putting any effort into.”
She said that she will keep campaigning because “Laura would be expecting us to continue the fight”.
Mrs Nuttall added: “There’s been no improvement in decades for this cancer.
“We’re just going to have to be more noisy about it because unless we do that nothing is going to change.”
Ms Nuttall, from Barrowford, Lancashire, was diagnosed with brain cancer in autumn 2018 following a routine eye test.
She was initially told by medics that she would have 12 months to live and dropped out of university in London and underwent an operation to remove the largest of eight tumours.
But in September 2019 she was able to resume her studies closer to home at the University of Manchester and completed a number of items on her bucket list before she died, including completing her degree, meeting Michelle Obama, piloting a Royal Navy patrol boat and presenting a television weather bulletin.
In August 2021 comedian Peter Kay performed two sell-out gigs in Manchester to raise money for Ms Nuttall and Hollywood A-lister Sandra Bullock sent her a touching video message just days before she died in May.
The OurBrainBank report sets out the state of care and therapies available to people diagnosed with glioblastoma in the UK.
The document, which will be presented to the British Neuro-Oncology Society conference in Manchester later this week, says that although there have been many cancer advances in recent years, little progress has been made on glioblastoma, with the standard of care in the NHS unchanged for almost 20 years.
The authors set out the steps which should be taken to improve the situation for patients including genome sequencing for brain tumours removed during surgery, better information on glioblastomas on NHS and Government websites and more clinical trials.
The campaign is also being backed by journalist Richard Clemmow, the widower of former BBC executive Jana Bennett, who died in January 2022, aged 66.
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. We all need to use our brains and focus our minds on the report’s findings immediately.”
A Department of Health and Social Care spokesperson said: “Brain cancer can be a devastating disease – which is why we’ve specifically allocated £40 million for research in this area, on top of £1 billion a year for wider health research.
“We’ve invested in every suitable application made and the funding will continue to be available for further studies to develop new treatments and therapies for brain tumours.
“To encourage further successful applications, we are investing in infrastructure, workshops for researchers and training for clinicians.”
For more information visit: https://www.ourbrainbank.org/use-your-brains/