This petition was submitted during the 2015-2017 parliament
Petition Fund more research into DIPG brain tumours, which are almost universally fatal.
In April this year our world turned upside down and our heart shattered to pieces as the consultant's diagnosis confirmed that our beautiful 6 year old daughter Kaleigh had a condition called DIPG, a rare, aggressive, inoperable brain tumour. This is an evil that no family should have to go through.
More details
• DIPG - MOST FATAL form of brain cancer which grows in the pons (middle) area of the brainstem making it inoperable.
• NO effective treatment or known cure available.
• DIPG primarily affects children between 5 and 10 years of age.
• Average survival time from diagnosis is just 9 months.
• Every 9 days a child in the UK is diagnosed with DIPG.
• Just 1% of the national spend on cancer research has been allocated to brain tumours.
More funding for research is urgently needed, please support us!
This petition is closed This petition ran for 6 months
Government responded
This response was given on 15 July 2016
The Government has set up a new working group on how to increase the impact and quantity of brain tumour research, including that on DIPG to achieve better outcomes for patients and their families.
Read the response in full
The Government agrees that an increase in the level of research into diffuse intrinsic pontine gliomas (DIPG) and other brain tumours is crucial in order to achieve better outcomes for patients and their families who are affected by these devastating diseases.
George Freeman, the Minister for Life Sciences, is therefore convening the new Department of Health Task and Finish Working Group on Brain Tumour Research. This is bringing together clinicians, charities and officials to discuss how, working together with research funding partners, we can address the need to increase the level and impact of research into brain tumours.
The Working Group will be chaired by Professor Chris Whitty, the Department’s Chief Scientific Adviser, and will report directly to the Minister for Life Sciences. The Government anticipates that the Working Group will need to meet in person three times before completing its tasks by September 2017.
The Department funds the National Institute for Health Research (NIHR) to increase the volume of applied health research for the benefit of patients and the public, drive faster translation of basic science discoveries into tangible benefits for patients and the economy, and develop and support the people who conduct and contribute to applied health research. NIHR cancer research expenditure has risen from £101 million in 2010/11 to £135 million in 2014/15 (the latest available figure). Most of this investment (£111 million in 2014/15) is in cancer research infrastructure where spend on specific disease areas such as brain tumours cannot be separated from total infrastructure expenditure. This infrastructure including NIHR biomedical research centres and the NIHR Clinical Research Network.
The Medical Research Council (MRC) is one of the main agencies through which the Government support medical and clinical research. It is an independent research funding body which receives its grant in aid from the Department for Business, Innovation and Skills. The MRC supports research through a range of grants and personal awards to scientists in universities, medical schools and other research institutes and welcomes investigator-initiated research proposals in all areas of research relevant to human health. Between 2010/11 to 2014/15 the MRC spent £10.9 million supporting research into brain and pituitary tumours, spanning basic discovery science, translational projects to progress treatments to clinics and early clinical trials. MRC will be represented on the Working Group.
Department of Health
Related activity
E-petition forces Government rethink on brain tumour research funding
The Government has responded to our report on funding for research into brain tumours which talked about an earlier petition that also called for more research into DIPG brain tumours. Our report called for decisive action to tackle the historic underfunding of brain tumour research.
The Government has said:
• They agree that action is needed
• They agree that current funding for brain tumour research is not enough
• They have promised to create a group of experts (working group) to address the problem
You can read the Government's response on our website: www.parliament.uk/brain-tumour-research-response
What happens now?
We (the Petitions Committee) will continue to update you on what is happening. Our Chair, Helen Jones MP has said:
"The Petitions Committee warmly welcomes this positive response from the Government. We hoped that our report, which includes many of the deeply moving stories we heard from members of the public, would give them a louder voice. It seems that they have finally been heard.
The Committee will be keeping a close eye on the progress of the working group. The Government's commitment to take long-overdue action on brain tumour research funding, which has been neglected by successive Governments for decades, is of course very welcome.
However, it seems that the Government has not yet accepted some of our important recommendations. The response often speaks about Government action on cancer in general, without recognising one of the central messages of our report: that the complexities of brain tumours mean that they do not always benefit from general cancer research.
There are also several areas where the Government seems to have ignored the expert evidence heard by the Committee. These include: the evidence we heard about the difference between NICE guidelines for GPs and the more detailed guidance offered by the HeadSmart campaign; the challenges faced by young research scientists who want to pursue a career in brain tumour research; and the importance of explicitly taking account of the number of life years lost to a disease when determining research priorities.
The Committee will now want to work with the Government to make sure that our detailed recommendations are put into practice. Brain tumour patients and their families will be expecting real action, not just warm words, to come out of this process.
I would like to pay tribute, on behalf of the Committee, to the Realf family. With the support of Brain Tumour Research, they have campaigned tirelessly to bring this issue to Parliament. They have already done a huge amount to raise awareness among MPs—as have the many other members of the public who took part in the Committee’s inquiry and encouraged their MPs to speak in the debate on the petition. It is now up to the Government to ensure that their efforts have not been in vain."
Maria Lester, who started the petition which inspired the Committee's inquiry said:
“I am pleased that the Government formally accepts that a greater level of brain tumour research is urgently needed. As the Petitions Committee's excellent report points out, brain tumour patients have been failed for decades, and I hope that this response is an important step towards positive change. I would like to personally thank the Committee and the charity Brain Tumour Research for helping to raise awareness of this issue on a national level.
Brain tumours are the biggest cancer killer of children and the under 40s, and it is vital that the Government takes into account the number of life years lost when prioritising research spend.
I look forward to seeing what the working group suggests - and I hope that the Government's encouraging words will translate into meaningful action.
It may be too late for my brother Stephen, but it is never too late to make a difference.”
Who are we?
We are a group of cross-party MPs called the Petitions Committee. We are independent from Government. You can find out more about us on our website: http://www.parliament.uk/petitions-committee/role