Petition for research funding into brain tumours

A debate has been scheduled for 16.30 on 18 April to discuss the findings of the Petitions Committee Report Funding for research into brain tumours. MPs can attend and raise issues on behalf of constituents and we encourage people affected by a brain tumour to contact their MP and ask them to attend and share their story.

Along with the charity Brain Tumour Research, which helped to instigate the petition that led to the report, we are encouraging people affected by a brain tumour to contact their MP and ask them to attend and share their story.

We welcome the Committee's decision to bring MPs together to reflect on the recommendations in the report. It is an opportunity to raise awareness of the issues among MPs and to reiterate the necessity of a change in policy for everyone affected by a brain tumour. The debate will not end in a vote on a specific recommendation nor commit the Government to future action. However we hope that the Government will acknowledge the findings within the report and show some intention to address the recommendations through legislative or non-legislative means.

We have developed a template letter, similar to the one drafted by Brain Tumour Research (accessible at the end of this page) to help you contact your MP and our policy team are happy to answer any questions you may have. Find your local MP here.

The report makes a number of recommendations that relate to work that The Brain Tumour Charity have undertaken. The first set of recommendations around early diagnosis and awareness refer to National Institute for Health and Care Excellence (NICE) Guidelines on Suspected cancer: recognition and referral, the training of healthcare professionals on the symptoms of brain tumours, and public health awareness initiatives.

The committee heard that the NICE Guidelines on Suspected cancer: recognition and referral have lost all of the detail present in the 2005 version on which symptoms should trigger a referral for brain tumour in children. The HeadSmart campaign has received NICE NHS evidence accreditation and we will continue to campaign for its inclusion into the guideline.

A HeadSmart education module has been developed to help health professionals recognise the symptoms of brain tumours in children. A parallel e-learning module has been developed in partnership with the Royal College of GPs which when completed by a healthcare professional can be added to a continuing professional development log. We are also looking to develop a continuing education and training module for opticians. Through our advocacy work we have engaged Clinical Commissioning Groups (CCGs) to distribute the HeadSmart guidelines and e-learning module through their network and raise awareness amongst healthcare professionals.

Following on from the HeadSmart campaign we are funding two research projects to better understand the diagnostic pathway for adults with brain tumours. You can read more about them here.

Last year we campaigned for HeadSmart to be included in the public health awareness campaign Be Clear on Cancer. We met with Public Health England but unfortunately could not get brain tumours included in the campaign. We are pleased that this report reiterates the importance of a public health campaign for brain tumours and have included calls in our regional manifestos for brain tumours to be included in equivalent Government public health initiatives in Scotland and Northern Ireland.

The main focus of the original petition and this report is research for brain tumours. We are pleased with the recommendation that the Government gives a clear statement of whether it thinks funding levels are adequate and, if not, what it will do to ensure that funding for brain tumour research increases. The Brain Tumour Charity have invested £18.3 million to date into research and stated in the evidence session the need for leadership and prioritisation from the Government in research for brain tumours.

In our research strategy A Cure Can't Wait we made a commitment to bio banking to accelerate research progress and in January 2015 launched a funding call to pilot a centralised biobank for brain tumour tissue. We are pleased that the report has reiterated that the Government should ensure there is effective coordination of bio-banking and tissue collection, to facilitate brain tumour research.

With few treatment options available to people affected by a brain tumour we understand the importance of improved access to off-label drugs which show evidence of the potential to treat brain tumours. Last year we campaigned with Breast Cancer Now and a number of other charities for the Off-Patent Drugs Bill. Unfortunately the Bill failed to pass the second reading in the House of Commons but we will continue to campaign for a non-legislative solution to this issue.

If you would like to know more about our policy work or our reaction to the findings in this report you can contact the team at