Welcome to our new look campaigning update which we hope you will continue to enjoy reading on a weekly basis.
The content will remain the same – an update on all that Thomas and Hugh are doing on behalf of the brain tumour community to influence decision makers to provide greater funding for brain tumour research.
This new format will enable us to understand more about what you like to read about too and we are excited to find that out!
At Brain Tumour Research we reflect and amplify the voice of the brain tumour community and whilst our drive will always be to increase research funding, as providers of the secretariat to the All-Party Parliamentary Group on Brain Tumours (APPGBT) we have a wider role to play. Just this week we have had conversations with two campaigners wishing to bring their concerns and experiences to the APPGBT regarding The Department for Work and Pensions (DWP) and the way it administers Personal Independence Payment (PIP) and driving licenses and the return of licenses in a timely fashion by DVLA – we will make sure these concerns are raised at Westminster.
Although the Pathway to a Cure report is uppermost in our minds for the next meeting of the APPG please don’t forget that in 2018 there was the A Cost too much to bear? report in which our Chair Derek Thomas MP noted that "cancer of the brain is uniquely destructive. The changes a brain tumour can cause in cognition, behaviour and personality result in high costs, both economic and social, which are borne by individuals, the health system and the wider public purse".
This week we were pleased to attend the #FutureofHealthcare conference, organised by the New Statesman. We’ve heard a wide range of views on the future of life sciences. Lord James Bethell said that turning “scientist bench into product is often too slow”. Steve Brine MP welcomed Cancer Research UK's upcoming manifesto and encouraged more consistency of thought, as well as more longer term thinking regarding healthcare. Shadow Health Minister Karen Smyth MP called for a new approach, “rather than building a system around certain conditions, we need to build a system around people".
Thanks to the incredible support of the brain tumour community, we have more than 81,000 signatures on our petition calling for increased investment for research into this devastating disease which kills more children and adults under the age of 40 than any other cancer.
The petition has now closed and we are grateful to each and every one of our loyal supporters who helped us achieve this impressive total in just six months, galvanising their networks to get behind our cause. We have welcomed many new people to our community and our voice is being heard louder than ever.
Dan Knowles, our Chief Executive, said: “Today we are sending out a heartfelt thank you to everyone who helped us by signing the petition and encouraging everyone they know to get involved. Once again, the brain tumour community has answered our call and we will now ensure your voice is heard loud and clear. We will continue to amplify your voice in the corridors of power and have exciting plans to engage with politicians, including a planned hand-in at No. 10 Downing Street, to keep up the pressure required to drive the change that brain tumour patients and their families need and deserve.”
A particular issue for tackling brain tumours is the complexity of drug absorption through the blood-brain barrier. This complexity is explored in a blog by my colleague Nicola - Everything you need to know about the blood-brain barrier - and it is also something noted in the Pathway to a Cure inquiry report that recommends making "the blood-brain barrier a strategic priority, encouraging investment in cutting-edge research, which could yield ‘game-changing’ results in the treatment of brain tumours and other neurological diseases".
The blood-brain barrier will be discussed at next week's researcher workshop which is happening in Milton Keynes. We are very excited about bringing together a roomful of 80 brain tumour scientists because they bring hope and last year's workshop was an inspiring event.
Next week we will be back with news from the researcher workshop and a look forward to the meeting of the APPGBT.
Wishing you all a peaceful time until then,
Hugh and Thomas