As the annual Brain Tumour Awareness Month (March) draws to a close I believe those of us engaged in this campaign (for better awareness, more research and more effective treatments) understand more clearly where the priorities must lie.
Right at the start of March I was privileged to take part in the Success Conference. The conference brings together clinical leads across the country with survivors of childhood brain tumours. I know of families in West Cornwall who have lost their child to a brain cancer. I also know families whose children are left with severe challenges as a result of their brain tumour and the treatment used to remove it. What we don’t do well enough is to minimise the injury caused by the treatment. Nor do we coordinate well enough the child’s rehabilitation across social care, health care, education and any other intervention to improve the life chances of the child and the support needed across the family. A family’s experience can vary from one to another but there is significant room for improvement across the board. What is clear is that one single point of contact is needed. This individual would have authority to coordinate all that a family needs for as long as is needed (including into adulthood). I suggest this would be an occupational therapist as I believe that they would be best placed to advocate for a family who otherwise lives with the need to fight for every piece of help or intervention needed. Having served as the Chair of the Brain Tumour All Party Parliamentary Group for several years now, I know children are living with reduced life chances following their treatment. If access to effective therapies, education and opportunities had been better coordinated, their life chances and lived experience would have been better.
The other key message emerging from this Brain Tumour Awareness Month is the need to implement a monitoring system for brain tumour research spending. In 2018, we secured a commitment to spend £40m on brain tumour research over 5 years. To date, only £12m has been deployed. The All Party Group has wrestled with the National Institute of Health and Care Research, which is the body responsible for awarding research funding, but little progress has been made to release this funding. The funding is still in place but the levers to deliver this funding for brain tumour research are not. The Government must create a new Brain Tumour Research Institute – with patient groups, charities, researchers, clinicians and Government. The purpose being to drive discovery and transitional research to ensure patients have access to the latest treatments, technology and ultimately a cure. We can no longer tolerate the lack of research into a disease that wreaks such havoc and trauma on so many lives. Progress has been made in the way we treat brain cancers and tumours and in our understanding of the disease. However, all too often the prognosis is far from good, and every family deserves better.
