Thank you for your support!
Almost 700 people took action by getting in touch with their local candidates or by signing our petition calling for changes to bereavement support payments.
In the lead up to the general election on 8 June 2017, our #YourVoiceMatters campaign saw hundreds of people come together to ensure that important issues specific to the brain tumour community were put front and centre.
We asked political parties and election candidates to commit to four policy changes. Hundreds of people supported the campaign by getting in touch with their local candidates to help spread the word.
We will continue to work with our community to ensure that these issues are put front and centre of the political agenda. We know there is lots of work to be done, but with your help we can achieve our ambitious goals.
Learn more about each of our key asks below:
It's crucial that brain tumour researchers can make applications for EU research funding to help ensure that investment in research into brain tumours goes further and to encourage collaboration. The UK Government has pledged to guarantee funding for EU research projects until Brexit, but it's important that UK researchers can continue to do this regardless of EU status.
The Samantha Dickson Brain Cancer Unit at UCL was able to secure £1.7 million of further funding from the EU, after investment from The Brain Tumour Charity, allowing them to expand their research work.
We want funding to be guaranteed for EU research programmes after 2020.
Greater awareness of the signs and symptoms of brain tumours in children and teenagers is vital to driving earlier diagnosis, saving lives and reducing long-term disabilities.
Our evidence-based HeadSmart campaign is equipping the public and healthcare professionals with the information they need and has, since launching in 2011, reduced average diagnosis times of childhood brain tumours from 9.1 weeks to 6.5 weeks.
Our goal is to drive this down to 4 weeks in line with NHS targets.
We want early diagnosis campaigns rolled out across the UK.
5-ALA (the pink drink) makes tumour cells glow under ultraviolet light enabling more accurate removal of tumour tissue and less damage to surrounding healthy tissue. 5-ALA is currently only available to patients living with a high grade glioma and not all of those patients will be suitable for the drug – it's currently suitable for around half of all people. Unfortunately, not all hospital trusts fund access to 5-ALA meaning that in some areas of the UK availability is limited or non-existent.
We don't think it's fair that access should be determined by where you live, access should only be limited if it is not clinically appropriate.
We want 5-ALA to be available for all patients where clinically appropriate.
Recent changes to bereavement benefits mean widowed parents can now only receive payments for up to 18 months after a partner's death. This is a significant change from Widowed Parents' Allowance, which allowed parents to claim until a child turned 20 or left full-time education.
Our research shows that 1 in 2 people face financial difficulty after a brain tumour diagnosis and reform to the Bereavement Support Payment would help to ease the financial challenges created by the loss of a loved one and provide financial security at an incredibly difficult time.
We want the Bereaved Support Payment to be available for up to 10 years.
We're supporting a petition, created by Susannah Keogh, one of our Young Ambassadors, asking the next Government to make changes to the Bereavement Support Payment that was launched in March 2017.
The petition calls on the next Government to extend the time widowed parents can claim Bereavement Support Payment from 18 months to up to 10 years. Under the previous benefit, widowed parents were able to claim until a child turned 20 or left full-time education. We believe that extending the claim period would provide financial security to bereaved families during a time of significant need.
Are you keen to use your personal experience and passion to help us drive real change for brain tumour patients?
We're launching an exciting new advocacy programme and are looking for supporters to help spread the word about the issues that affect our community.
Advocacy activities range from sharing our messages via social media to meeting with your local MP, so whether you can give a little time or a lot we'd love to have you on board.
For more information about the scheme, sign up here.