Campaigning & Reports
Brain Tumour Research Petition: UK Government acknowledges more must be done for brain tumour patients
Following an e-petition started by Maria Lester, with the support of Brain Tumour Research, the House of Commons Petitions Committee decided to look into the issue of funding for brain cancer research. As part of the ongoing inquiry, the Committee reviewed over a thousand comments made by people from across the UK on an online forum. Scientists, patients and brain tumour charities all gave evidence of the chronic lack of funding for brain tumour research.
Over 120,000 people signed the Brain Tumour Research e-petition which had a closing date of 3rd February 2016 and as a direct result of the incredible and unprecedented attention, the Petitions Committee agreed to schedule a debate centred around how to fund more research into brain tumours, the biggest cancer killer of children and adults under the age of 40.
The Petitions Committee published a special report into their findings making recommendations for the government to respond to. Read the full report online here.
Following on from the success of this recent Parliamentary Debate that took place at Westminster Hall on Monday 18th April 2016, the brain tumour community welcomed an announcement that the Government has formally acknowledged more must be done for brain tumour patients and their families.
Health Minister George Freeman MP announced:
- A “Task and Finish” working group at the Department of Health looking at areas highlighted by the Petitions Committee report.
- He will ask the National Institute for Health Research (NIHR) produce a national register within a year to examine how public funds are spent on research.
- Work will be done to improve levels of earlier diagnosis and that brain cancer will be included in the Genomics England programme.
Mr Freeman formally accepted the Petitions Committee report, which has been described as “damning”, and recognised the “extraordinary call from people for the disease to be given higher priority”.
The Health Minister highlighted some of the most disturbing facts around this issue, including how “400 children a year are diagnosed, and we just do not understand or know exactly what is driving it”. Brain tumours kill more children and adults under the age of 40 than any other cancer… yet just 1% of the national spend on cancer research has been allocated to this devastating disease. He also pointed out that “unlike for most other cancers, brain cancer mortality rates have increased”.
Sue Farrington Smith, Chief Executive of Brain Tumour Research, said: “This debate was the most significant opportunity so far for MPs to consider this vital issue. It was their chance to listen to the 120,000 people who signed the petition, their constituents, and the 16,000 people facing this diagnosis every year.
“So many of the key issues highlighted in our Invest In a Cure manifesto have now been addressed and we will continue to apply pressure to ensure genuine progress is made. We have reached an important milestone on our journey and we will continue with renewed hope and determination.”
A National Research Funding Report, was then released on 11th October 2016, highlighting the continued underfunding and lack of awareness surrounding brain tumour research.
Devastatingly, every week, a family loses a child to a brain tumour, more than those lost, under the age of 15, to leukaemia.
In contrast to increasing survival rates for other cancers such as breast cancer and leukaemia, people dying from brain tumours under the age of 75 increased by 10%.
In 2015, charities funded 86% of national research into brain tumours, while Government spend on brain tumour research represented just 0.52% of its total spend on cancer research.
On October 18th 2016, Brain Tumour Research took this new information to the first meeting of the Government's Task and Finish Working Group, established in the wake of the Parliamentary debate on funding for brain tumours.
Brain Tumour Research will play a key role in these meetings, addressing the need for greater levels of brain tumour research funding in the UK.
At the APPG meeting held in Westminster on 14th December 2016, scientists, clinicians, patients and MPs all spoke in favour of the unique strategy from Brain Tumour Research and their funding long-term research at UK Centres of Excellence.
Thanks to your support, their influence in Parliament has never been stronger. Brain Tumour Research, along with its member charities, will carry this momentum into the next Task and Finish Working Group meeting in January 2017, where we will continue to call for urgent investment in brain tumour research.
We are extremely proud to be part of a UK-wide network of patients, families, activists and other charities campaigning at the highest level and that the woeful underfunding of brain tumours has now been acknowledged.
To find out more please visit Brain Tumour Research
Thank you so much to everyone who signed and supported the petition for greater funding into brain tumours. Your continued efforts are truly appreciated and we are all extremely grateful.
Together we will find a #cure
Brain Tumour Research Published Reports
When it comes to the latest analyses, Brain Tumour Research leaves no stone unturned and continues to publish pioneering reports, highlighting new statistics about brain tumours and why campaigning for more funding is crucial and awareness is vital.
Their reports reveal the true statistics surrounding brain tumours in the UK and many of the facts, numbers and percentages in wide use today by many parties including other charities and official bodies were first collated and publicised by them.
These reports are thorough, authoritative and detailed. Indeed, they are the leading voice in the UK calling for a sea-change in the way brain tumour research is funded and we are proud to be part of them.
The first ground-breaking report in July 2009, titled The Inequality of Funding , was the first of its kind to reveal the hard facts surrounding brain tumours.
The follow-up report in March 2013, titled Brain Tumour Research - Funding Flows, developed in partnership with New Philanthropy Capital, revealed further insights into the inequality and chronic lack of funding coupled with an alarming increase in mortality rates.
The report in July 2013 was on the state of National Research Funding for Brain Tumours .
On 1st July 2014, they published a Report Update on National Research Funding which is a companion volume to their 2013 report above.
On 17th March 2015 the Invest In A Cure manifesto was presented as an open invitation and call to action inviting the UK Government to work with Brain Tumour Research and its partner organisations to shine the spotlight on research funding, incentivise and prioritise treatment for brain tumour patients, and facilitate innovation by providing a dedicated fund for brain tumour research.
A National Research Funding Report, was released on 11th October 2016, highlighting the continued underfunding and lack of awareness surrounding brain tumour research.
Other Published Reports
In October 2010, the Brain Tumour Consortium, comprising of Brain Tumour Research and its member charities, (formerly known as Brain Tumour UK and the Samantha Dickson Brain Tumour Trust), with the International Brain Tumour Alliance, launched a manifesto, at the Houses of Parliament, for everyone affected by a brain tumour. They called on the Government to join society's fight against brain tumours.
The manifesto calls on Government to work in partnership with the brain tumour charities to:
- Ensure early diagnosis and treatment for everyone affected by a brain tumour
- Implement the best practice guidance for treating people with the disease
- Significantly increase Government investment in brain tumour research
Get Involved, Get Your MP Involved, Campaign With Us !
If you would like to find out more about how to get involved, campaigning, news, lobbying, or how you can get your MP involved, please visit the Brain Tumour Research website, get in touch by contacting them on 01908 867 200, or email them.