E-petition forces Government rethink on brain tumour research funding

16 June 2016

The Petitions Committee has today published the Government's response to its first ever report, which called on the Government to take decisive action to tackle the historic underfunding of brain tumour research.

The petition was started by Maria Lester in August 2015, to the mark the anniversary of the death of her brother, Stephen Realf. Stephen, an RAF officer, who was diagnosed with a brain tumour at just 19 and died at the age of 26. The Committee launched its investigation after the Government's initial response to the petition failed to give it confidence that the Department for Health had grasped the seriousness of this issue.

In its response to the report, the Government says that it now accepts that action is needed to address the serious concerns expressed by the Committee and by people who signed the e-petition. The Government also admits that not enough research is being carried out to reduce the significant disease burden caused by brain tumours.

The Government has announced that it will be convening a working group of clinicians, charities and officials to discuss how to address the need for more brain tumour research.

Chair's comments

Helen Jones MP, Chair of the Petitions Committee 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."

Background

Further information

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