Petition Appeal to get massive government grant for incurable brain tumour DIPG research.

You may be interested to know that the Petitions Committee investigated a petition calling for more research into brain tumours. It published a report on the issue which contains its findings and recommendations for Government action. The report refers to the petition you signed calling for a government grant for incurable brain tumour DIPG research, on pages 46-47 of its report. You can find out more and read the report on the Committee's webpage:
http://www.parliament.uk/business/committees/committees-a-z/commons-select/petitions-committee/news-parliament-2015/brain-tumour-research-funding-report-publication-15-16/

Following its report, the Committee has scheduled a Parliamentary debate on brain tumour research funding on Monday 18 April. The debate will begin in Westminster Hall at 4.30pm.

You can watch the debate live on the 18 April at 4.30pm using this page: http://www.parliamentlive.tv/Commons

You may wish to contact your local MP to tell them why this debate is important to you and suggest any points you would like them to raise. You can find out who your local MPs is, and how to contact them, here: http://www.parliament.uk/mps-lords-and-offices/mps/

You can find out more information about the debate on the Petitions Committee website: http://www.parliament.uk/business/committees/committees-a-z/commons-select/petitions-committee/news-parliament 2015/petition_debate_brain_tumour_research/

The Government has responded to our report on funding for research into brain tumours which talked about this petition. 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 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.”