Baroness Tessa Jowell recently spoke in the House of Lords about her diagnosis of a brain tumour. “On 24 May last year, I got into a taxi but couldn’t speak. I had two powerful seizures. I was taken to hospital. Two days later, I was told that I had a brain tumour, glioblastoma multiforme.” Her treatment began shortly afterwards.
She went on to say, “Today is not about politics but patients: patients and the community of carers who love and support them….. It’s about better-informed judgements by patients and doctors. And it is about sharing access to more and better data to develop better treatments…… Cancer is a tough challenge to all health systems, and particularly to our cherished NHS. However, there is reason for hope. It is called the Eliminate Cancer Initiative (“ECI” for short) ECI aims to do three main things:
- First, link patients and doctors across the world through a clinical trials network,
- Secondly, speed up the use of adaptive trials
- And thirdly, build a global data base to improve research and patient care.
“Usually, drug trials test only one drug at a time, take years, and cost a fortune. New adaptive trials can test many treatments at the same time. They speed up the process and save a lot of money. ECI also has a secure cloud platform where doctors can share data and insights. At present, so much data is held in siloes with limited access. That reduces its value. This is all a quite new approach. Already, collaborative discussions are underway in England.
“For what would every cancer patient want? To know that the best, the latest science was being used – wherever in the world it was developed, whoever began it. What else do they want? They need to know they have a community around them – supporting and caring. Being practical and kind. For while doctors look at the big picture, we can all be a part of the human-sized picture. Seamus Heaney’s last words were, “Do not be afraid”. I am not afraid, but I am fearful that this new and important approach may be put into the ‘too difficult’ box. But I also have such great hope.”
And as we also observe here at The Macmillan Wellbeing Centre, Tessa said, “So many cancer patients collaborate and support each other every day. They create that community of love and determination wherever they find each other.”
In the end, what gives a life meaning is not only how it is lived, but how it draws to a close. I hope this debate will give hope to other cancer patients like me. So that we can live well with cancer, not just be dying of it. All of us. For longer.”
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