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Patient choice: Should patients have more freedom to choose?

Tonight we watched an emotional Panorama following three families as they contend with a high grade brain tumour diagnosis.

Tonight we watched an emotional Panorama following three families as they contend with a high grade brain tumour diagnosis. The overwhelming feeling from the show was that with so little development in brain tumour treatments over the last forty years patients are looking to try new and innovative treatments before they may have fully gone through the regulatory process.

This is a pertinent topic currently, with the US recently passing the Right To Try Act, which gave terminally ill people the right to try experimental treatments that have completed Phase I testing but are yet to be approved by the Food and Drug Administration (FDA). The UK has had since April the Accelerated Access Pathway (AAC), which means that five medical devices or drugs will be selected for a fast-track process each year, meaning clinical drug treatments will be more readily available for uptake on the NHS.

Tessa Jowell, one of the people featured on this show, was a long-time advocate of greater patient choice and for those decisions to be in the hands of patients rather than regulators. Her daughter, Jess Mills, expressed this perfectly when she appeared on Panorama earlier in the evening explaining that the only time I have ever seen mum cry since her diagnosis was when she realised that those in the waiting room with her may live or die based on their privilege or ability to access other treatments.

Another of the patients on the show, Robert Howard, was keen to participate in a clinical trial but with so few patients with a glioblastoma be eligible he was not able to. Fortunately standard treatment is currently holding the tumour at bay.

Jack Sanders, sitting with his family, said he would do anything and go anywhere to access something that would help. Eager to try something new he has had to fund his own treatment in Germany by raising £80,000. Dealing with raising money is something that should clearly not fall to those already navigating a complex system at a difficult time.

Though to say that this is cut and dry would be misleading, as there above legislation in the US and the UK both have their detractors. Criticisms include giving people false hope and that pharmaceutical companies are under no obligation to offer the treatments to patients.

It was reassuring to hear so many things that we are fighting tirelessly on are now things that are becoming mainstream Government policy as a result of the work Tessa Jowell and so many in our community. This includes data sharing, and our Brain tumouR Information and Analysis Network (BRIAN), as well adaptive clinical trials something we are looking to fund with our Glioma Clinical Trial.

In the words of Baroness Tessa Jowell, during her final House of Lords debate, wouldn’t you want “the best, the latest science was being used and being used for them”. I agree, but I think that it so important to really understand what our community’s experience is currently and what they would like to see change. As such, we have designed a short survey to help with this and that will help shape our work as we campaign for positive change.

The survey is now closed, thank you to everyone who took part.