Tag: Brain Tumour Charity

Experts meet to discuss recommendations to improve brain tumour diagnosis in Scotland

Eight key areas to improve brain tumour diagnosis have been identified in Scotland following a roundtable discussion with healthcare experts. 

The Brain Tumour Charity and Dxcover Ltd. facilitated a discussion with GPs, NHS representatives, researchers, the co-convenor of the Cross Party Group on Cancer and representatives from the Chief Scientist’s Office, to improve diagnosis for people with a suspected brain tumour.  

Each year, more than 1000 people in Scotland are diagnosed with a brain or central nervous system tumour (1), leading to urgent calls to prioritise better care and improve pathways to a faster diagnosis.  

Following the discussion with the panel of experts in February 2024 and further research, a report was produced in partnership with The Brain Tumour Charity and Dxcover which identified eight key areas as having the most potential for improving brain tumour diagnosis.

They include ensuring that patients are monitored throughout their diagnosis until symptoms are explained or resolved, enabling optometrists to refer directly to neurology if a person presents with concerning visual symptoms and prioritising innovation to improve diagnosis of brain tumour.

12 recommendations have now been made to NHS Scotland and the Scottish Government about the changes required to ensure diagnosis pathways are effective.  

The recommendations include providing guidelines to improve care and raise awareness of brain tumours, allowing opticians to refer directly to neurology and establishing a diagnostic/triage tool that would help diagnose people faster (2). 

The roundtable also started a discussion on where a diagnostic tool would be most suitable in healthcare pathways. Dxcover Ltd is a Glasgow based company developing diagnostic tools for brain tumours and has developed a liquid biopsy test with artificial intelligence that could be used in the brain tumour diagnosis pathway.  

The Brain Tumour Charity and Dxcover will continue to work with NHS Scotland and the Scottish Government to ensure that people with a suspected brain tumour are prioritised and that the pathway to diagnosis is improved for patient benefit. 

Cameron Miller, Director of External Affairs and Strategy at The Brain Tumour Charity said: “The recommendations we are suggesting to improve the brain tumour diagnosis pathway in Scotland are based on a fruitful and impactful discussion The Brain Tumour Charity and Dxcover initiated with Scottish healthcare professionals and policymakers.

“These are stepping stones to improving diagnosis for people living in Scotland and we are committed to ensuring that people facing a brain tumour diagnosis have the support they need to ensure they are diagnosed faster and have the quickest access to the best treatments available.” 

Prof. Matthew J. Baker, CEO of Dxcover said: “Dxcover was founded to enable the earliest detection of cancer. We believe that the combination of Dxcover’s multi-omic spectral analysis and machine learning will lead to the greatest impact on patient recovery, lifespan and quality of life post-diagnosis.

“We have recently launched our EMBRACE study, a pan-Europe 2,200 patient performance evaluation of the Dxcover® Brain Cancer Liquid Biopsy which will enable CE marking and provide a much-needed tool for patients.” 

Million pound milestone in Emily’s memory

A family which has raised more than a million pounds to fund a research project into the most aggressive type of brain tumour has unveiled a plaque at the University of Edinburgh laboratory where the work takes place. 

The Emily Morris Fund, set up in memory of a woman from London who died from a brain tumour aged just 31, was established in 2017 in collaboration with The Brain Tumour Charity. 

Emily’s father, Jack Morris, then became Chair of Trustees at the organisation.

Now he and his family have seen for themselves how their fundraising is helping to screen thousands of drugs to see if any have the potential to treat glioblastoma. 

The project is co-funded by Cancer Research UK and is believed to be the largest of its kind in the world: an unbiased screening of drugs in human glioblastoma cell models. 

Emily first became unwell with headaches and what doctors thought was a flu virus in 2015 when she was 29. 

Then her heart rate rocketed for no apparent reason and a cardiac specialist prescribed her medication but couldn’t find the underlying cause. 

When she began to experience a strange smell and taste up to 20 times a day, she was referred to an ear, nose and throat specialist who sent Emily for an MRI scan.  

Expecting nothing out of the ordinary, Emily went to find out the results on her own and was shocked when a consultant told her she had a brain tumour and needed urgent surgery. 

That craniotomy removed much of the tumour and confirmed it was a glioblastoma multiforme, one of the most aggressive and difficult to treat brain cancers. 

Emily’s treatment included 30 sessions of radiotherapy and nine rounds of chemotherapy, but the tumour returned. 

Emily’s father Jack said: “Emily had six months after her initial treatment where she did pretty well. Following that it was then a process of, as I used to say, trying hold back a tsunami.” 

In November/December 2016 Emily’s oncologist said she was fighting an uphill battle, and her family agreed that she should come home. 

Jack continued: “I had a moment that I’ll treasure for the rest of my life with Emily before she died. I was just sitting with her and at this time she couldn’t speak and I did a little wave and said ‘I love you’ and she just said to me ‘love you’. I don’t know how she found the words but they were the last words she ever said to me.” 

Emily died on 3 January 2017 and as she had been such a colourful character who loved jewellery, her mum Susan started making bracelets to sell in her memory. 

Friends and family far and wide organised marathons, bike rides and numerous other challenge events to raise money in Emily’s memory. Her family used these proceeds to set up The Emily Morris Fund and sought advice from The Brain Tumour Charity.  

The Charity told them about Professor Neil Carragher’s research at the University of Edinburgh and they were “absolutely blown away” by his efforts to find treatments for glioblastoma and decided to support it.  

Jack said: “Funding research through The Brain Tumour Charity, wherever it needs to be in the world, by the best practitioners, by the best institutions, is the lifeblood of finding a cure for this awful disease.” 

Emily’s brother, Bobby, added: “We will always keep Emily’s memory alive because we talk about her a lot.

“Whenever we’re at a family dinner or a birthday, we’ll always do a little toast to her and just make sure that she’s remembered … Our family will always be a family of five people, we’re not a family of four.” 

You can find out more about Professor Carragher’s research here:

https://www.thebraintumourcharity.org/news/research-news/finding-new-drugs-for-treating-glioblastoma/ 

And read Emily’s full story here: https://www.thebraintumourcharity.org/emily-morris-fund/ 

Underbelly’s Big Brain Tumour Benefit

Stars including John Bishop, Phil Wang, Maisie Adam and Jason Byrne turn out in support of Underbelly’s Big Brain Tumour Benefit 2022 at the Fringe

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Underbelly’s Big Brain Tumour Benefit

Tuesday 16 August, 7.30pm, McEwan Hall

Tickets: https://underbellyedinburgh.co.uk/event/brain-tumour-benefit 

Underbelly has announced the line-up for its fourth Big Brain Tumour Benefit in its biggest venue at the Edinburgh Festival Fringe, McEwan Hall. 100% of box office income going to The Brain Tumour Charity, the world’s leading brain tumour charity and the largest dedicated funder of research into brain tumours globally.

  • So far, Underbelly has raised nearly £100,000 for The Brain Tumour Charity from these benefits alone, including £30,000 at the last Fringe benefit in 2019.
  • Jason Byrne (MC), John Bishop, Jessica Fostekew, Rhys Nicholson, Michael Akadiri, Phil Wang and Maisie Adam are confirmed to appear in this year’s show with more guests to be announced.  
  • The show was created by Underbelly in 2017 following the diagnosis of an aggressive and rare form of brain cancer called Ependymoma in Alfie Bartlam, the son of Underbelly’s co-founder Ed Bartlam. 
  • Brain tumour research is severely underfunded in the UK and yet represents the biggest cancer killer for under 40s.

One of the hottest tickets on the Fringe, the annual line up sees star comedians throw support behind of The Brain Tumour Charity. 

MC’ed by one of the biggest selling comedians on the Edinburgh Festival Fringe, Jason Byrne, the line-up includes eponymous host of The John Bishop Show, Dave’s Edinburgh Comedy Award nominee for Best Show Jessica Fostekew, Phil Wang fresh off the back of his Netflix special Philly Philly Wang Wang Wang,winner of the Most Outstanding Show at the 2022 Melbourne Comedy Festival Rhys Nicholson, Michael Akadiri, winner of the Komedia New Comedian Of The Year Award 2020 and Maisie Adam, “one of the UK’s funniest comedians” according to The London Evening Standard.

All box office income goes directly to The Brain Tumour Charity, a cause close to Underbelly’s heart. Co-founder of Underbelly, Ed Bartlam’s son Alfie was just 4 years old when he was diagnosed with a form of aggressive brain cancer in 2017 and sadly died in 2019.

Research into brain tumours is severely underfunded in the UK and yet represents the biggest cancer killer for under 40s.  Around 500 children and young people in the UK are diagnosed each year but diagnosis times of childhood brain tumours are longer in the UK than in many other countries.

The Brain Tumour Charity’s Better Safe Than Tumour campaign aims to raise awareness of the common signs and symptoms in both children and adults and to support the public to get any concerning or persistent symptoms checked out by their doctor.

Ed Bartlam, Underbelly’s co-founder said: “I am so delighted that we are able to present the fourth of our Brain Tumour Benefit shows at Underbelly this year. The support from comedians and audiences for these shows has been incredible and we’ve raised over £100,000 for The Brain Tumour Charity since our first show in 2017.

“My son Alfie died aged 7 from brain cancer three days after the 2019 Fringe so this year’s shows will be particularly important and pertinent. We are committed to raising £1.4M in three years for specific paediatric brain tumour research and new treatments through a range of fundraising events.

“This annual Fringe show is a crucial part of that so do please buy a ticket to watch a truly amazing line up of comedians and raise money for this vital cause. It’s a win win!”

Gina Almond, Director of Fundraising and Marketing at The Brain Tumour Charity, said: “We are so proud of our continued partnership and loyal support from Underbelly and it is just brilliant that the Big Brain Tumour Benefit is happening again this year; such a welcome return after the pandemic.

“Our brilliant partnerships are key to raising vital funds for research and awareness of the devastating impact of a brain tumour.

“Brain tumours are the biggest cancer killer of children and adults under 40 and they reduce life expectancy by 27 years, the highest of any cancer and this must change.

“The Brain Tumour Charity is committed to fighting brain tumours on all fronts with a goal of doubling survival rates and halving the harm that brain tumours have on quality of life – and it is only through the support from so many people like Ed, Charlie and the brilliant Underbelly team that we can strive towards those goals.

“It’s fantastic news that the Big Brain Tumour Benefit is back this year, and we know it will be a blast. Thank you all for your incredible support.”

To book tickets for Underbelly’s Big Brain Tumour Benefit visit:

http://www.underbellyedinburgh.co.uk/whats-on/underbellys-big-brain-tumour-benefit