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Bucks cancer charity calls for change to stop suffering

Brain Tumour Research want to see more funding & research.

Published by Dan Gooding at 8:00am 7th March 2020. 6-minute read.

Bucks cancer charity calls for change to stop suffering

A Buckinghamshire charity is calling for change, because they say too many families can't get the cancer treatment they need.

Stats show one in three children who die from cancer have got a brain tumour and now Brain Tumour Research are calling for more funding to research and treat them.

As Brain Tumour Awareness Month gets underway, the charity is publishing the statistics which show one in three children who die of cancer are losing their lives to a brain tumour.

The disease is also responsible for one in four deaths of the under 25s, one in six of those under 40 and one in ten of those under 50.

Brain Tumour Research's statistics, which relate to deaths in England and Wales, are based on information originated by the Office for National Statistics.

The charity's Chief Executive Sue Farrington Smith MBE said:

"When my sister's little girl, Alison Phelan, was diagnosed with a brain tumour in August 2000, we were shocked and horrified to learn that there was no cure. We lost her just 10 months later, three weeks before her eighth birthday. 

"Twenty years on there is still a paucity of treatments for brain tumour patients and to think we continue to lose so many young people to this dreadful disease is deeply shocking.

"Less than 20% of patients survive beyond five years of their diagnosis whereas for cancers such as breast and leukaemia the figures are 86% and 51% respectively because of greater investment for research in those areas.

"Unlike many other cancers, brain tumours are indiscriminate. They can affect anyone at any time, regardless of age, gender, race or lifestyle. Too little is known about the causes and that is why increased investment in research is vital if we are to improve outcomes for patients and, ultimately, find a cure."

Campaigning for change

Hospital - bed/patient

The charity says that despite the fact brain tumours kill more children and adults under the age of 40 than any other cancer, historically just 1% of the national spend on cancer research has been allocated to the devastating disease.

It is campaigning for an increase in the national investment in research into brain tumours to £35 million per year. It is also fundraising to create a sustainable network of brain tumour research centres in the UK. 

Figures released last month by the National Cancer Research Institute show that, in the period from 2002/2003 (when records began) to 2018/2019, just under £100 million has been spent on research into brain tumours.

This is three times less than that spent on prostate cancer (£300 million), five times less than is spent on leukaemia (£500 million) and seven times less than has been invested in breast cancer (£679 million).

The mortality rate statistics originated by the Office for National Statistics apply to England and Wales and show that:

    • Brain tumours kill more children (those aged under 15) and adults under the age of 40 than any other cancer, representing one in six of all under 40s cancer deaths.
    • 1 in 10 cancer deaths under the age of 50 are attributable to brain tumours.
    • For males it is one in seven. In 2018, 358 (i.e. nearly one for every day of the year) males under the age of 50 died from a brain tumour. Only 12 males under the age of 50 died from prostate cancer. 
    • For females it is one in 13. In 2018, 250 females (i.e. five a week) under the age of 50 died from a brain tumour. By way of comparison 937 females under the age of 50 died from breast cancer.
    • One in four cancer deaths under the age of 25 are attributable to brain tumours. In 2018, 126 under 25s died of a brain tumour (i.e. over ten a month). For leukaemia, this figure is 110.
    • One in three cancer deaths for children (those aged under 15) are attributable to brain tumours. In 2018, 80 children died of a brain tumour. For leukaemia, this figure is 48. 

Case studies

MRI Scanner

Eight-year-old Kyle Morrison, from Hertfordshire, was diagnosed with the least survivable of all childhood brain tumours six months ago. His devastated mum Vicki was given the nightmare news that he had a year to live.

Now, half way through that "death sentence" she is desperately trying to raise the money needed for a clinical trial which she believes is their only hope.

Carla Dawson, from Nottingham, lost her two-year-old daughter Jorja-Rose to a rare and inoperable pineoblastoma brain tumour. Diagnosed at 15 months, Jorja-Rose underwent chemotherapy and a stem cell transplant which gave her six months of good health. Tragically, she passed away just three months after her parents got married.

Rob Bell from Launceston, Cornwall, was just 23 when his life was cut short by an aggressive brain tumour. Despite struggling with his balance and communication he gained a degree in English Language but was too ill to attend graduation. He passed away on New Year's Day 2013 and this year his father Gary is marking his 60th year - his seventh without his son - to raise money in Rob's memory for Brain Tumour Research.

It's a year since scientist Nadège Presneau, a 47-year-old north Londoner, underwent surgery to remove a grade two brain tumour which was diagnosed after months of mood swings, balance issues and severe headaches. A senior lecturer at University of Westminster,

Nadège's working life has been dedicated to experimental research and teaching and inspiring the next generation of cancer researchers.

Throughout her treatment she found her professional background to be a double-edged sword: "On the one hand, it helps in that I know what questions to ask the clinicians but, on the other hand, the more you understand, the scarier it can be." 
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