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We help to alleviate the confusion and provide a safer environment for those struggling with next steps to understand their options, make treatment decisions and ultimately give back more time to our clients to spend with their loved ones".
They specialise in coaching you through your cancer diagnosis, helping to manage the logistics that cancer treatment brings to you and your family, navigating you through the clinical process and building a support team around you.
ACT Above and Beyond was not around when Stuart was first diagnosed however its been founded by Cordelia Taylor and Dr Jack Kreindler. Both were involved in Stuart's treatment path.
A patient Navigator would have been completely invaluable to us at a time of high stress, complete bewilderment and confusion as to which way to turn. Although the cost might be initially prohibitive to make it accessible to all I would strongly recommend exploring their services and starting your fundraising campaign. Whilst it feels unfair to find out that some of the treatments will need to be self-funded you can have a look at our Fundraising Starter Toolkit here to help you get started.
After being diagnosed in 2018, Cordelia knows first hand what its like to be faced with a Glioblastoma diagnosis – the devastation at the lack of treatment options from NHS standard of care, the overwhelm and exhaustion that can follow trying to navigate your way through options, research and anecdotal stories.
What is ACT Above and Beyond?
In their own words:
"Cancer coaching, navigation & collaboration"
"Born out of the frustration many people encounter when facing a lack of treatment options after a hard-to-treat cancer diagnosis, our service supports and coaches cancer patients and their families through all the stages of going beyond standard of care. Our combined experience and accumulated resources, networks and knowledge from helping over 200 patients across 10 years enables a unique offering of support, guidance and bridge building between patients and clinicians.
We personally found all of the reading, research, project management and coordination of our medical teams across the world incredibly difficult and time consuming. I often had my head in the books, laptop and my phone trying to decipher a way to prolong and save Stuart. Not all GBM's are the same, in fact every single person has different complex genetic differences, so the treatment needs to be completely personalised.
We were fortunate that we connected with lots of other patients and caregivers and eventually worked out the best treatment path to take but it all took time. Time we did not have the luxury of affording. After being told by Stuart's first medical team that no other treatment options were available even if we consulted with them privately was terrifying, and then feeling like I was responsible for the decisions we made alongside other family members who helped with research added to the overwhelm and fear. None of us are medically trained nor were we experienced back then. If we had to do it all again I would 100% start working with ACT Above and Beyond straight away. The time and stress that they would have taken from us would have been worth every penny.