People affected by a brain tumour should have the same access to high quality treatment, care and information regardless of post code, age or tumour type. Unfortunately, this is not always the case. With your help we can change that.
In view of the challenges, particularly around variation in access based on where a person lives, we made equal access to high quality treatment and care for those affected by this disease a priority in its strategy to defeat brain tumours. We will highlight evidence and propose solutions to Government and others in the healthcare sector. We will also need your help to raise awareness of the problems and influence change.
“I felt that the treatment I had was the best it could be. It's not fair that other people in the same situation are not offered everything that I had. I would not want to have known if there was something I could have had to give me a better chance but the NHS didn't allow me to have it." Helen Hannam, patient
What we are campaigning for
Surgery to remove tumour tissue is a familiar treatment for many people diagnosed with a brain tumour and we think that surgeons should have the best tools at their disposal to give patients the best opportunity for survival and good quality of life. After all, the only factor surgeons can influence when it comes to survival is the removal of as much of a tumour as possible.
Our current focus is on equal access to 5-AminoLevulinic Acid (5-ALA), a surgical intervention to aid the removal of tumour tissue and spare healthy tissue in people with high grade gliomas.
Taken in the form of a pink drink prior to surgery it lights up tumour cells pink under florescent light and enables surgeons to see more clearly the tumorous tissue during the procedure. There is evidence that 5-ALA improves resection (the amount of tumour tissue which is removed) in high grade gliomas and we know that better resection improves survival.
There is no evidence that 5-ALA improves resection of low grade tumours.
Professor Keyoumars Ashkan, professor of neurosurgery and neuro-oncology lead at King's College Hospital in London, regularly trains surgeons in the use of 5-ALA:
“Fluorescent guided surgery has been one of the most significant developments in the management of patients with high grade gliomas in the last decade.
“In the simplest terms, you can only remove a tumour well if you can see it. That is exactly what this drug allows you to do.
“We introduced the technique at King's College Hospital almost eight years ago and I am confident that many of our patients have directly benefitted from it." Professor Keyoumars Ashkan
5-ALA may not be suitable for everyone with a high grade glioma or in all circumstances. That is why we encourage people affected by a high glade glioma to talk to their doctor about whether it is appropriate in their case.
"5-ALA is not going to cure you because there is no such thing as a cure for glioblastoma. What it can do is give you more time to spend with your family." Michael Weiner, patient
Support our campaign
Unfortunately, 5-ALA isn't available in every neurosurgical centre. There is a postcode lottery in place and so access is determined by where you are treated and not clinical need. We are working with healthcare professionals and politicians to change this and improve access.
We campaign to improve life today for all those affected by a brain tumour, but we're only able to do this alongside our incredible supporters taking action to help bring about real, lasting change. That's why we need people like you to join us.
Campaigning activities range from sharing our campaign messages on 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.