Dame Siobhain McDonagh

My hon Friend is absolutely right. Let us be absolutely clear: there is no route for an improvement in any of the rare cancers unless there are more trials—and the system mitigates against that. There is a lot of talk at the moment about the Government of stakeholders. The stakeholders involved in drug trials—the major pharma companies and cancer charities—do not get involved in these trials because for pharma there is no money in it, and for the big charities, there seems to be more interest in primary science and mice work than there is in using some of these amazing drugs to find out whether they can provide some sort of support to people with rare cancers. It is the lack of treatment options, and this inaction, that led me, alongside my sister’s extraordinary network of friends and supporters, to launch our own trial in her memory. When the system does not move quickly enough, patients and families are forced to take matters into their own hands. We have an established clinical trial now under way at the University College London Hospitals clinical research facility with encouraging early indicators, a wider trial programme mapped out and further trials ready to follow with protocols written. We are seeking to clarify how to secure the funding needed to repeat and extend this work using alternative drugs, so that more patients can benefit. We continue to raise funds to support that goal.