- improved life chances to cancer patients;
- deeper clinical understanding for oncologists and researchers in how to better treat tumour types;
- evidence for mainstream adoption".
The ways that ACT for Cancer Foundation work are by:
- Commissioning original, qualitative health research to assist patients, their families and their clinicians to make informed decisions when pursuing non-standard therapies;
- Providing the ACT Innovative Treatment Info Hub as to go-to resource for trusted information on novel treatments and trials;
- Encouraging more open discourse through symposiums and forums on novel therapeutic approaches, to combat clinicians’ reluctance to discuss any non-standard treatment options.
We had a couple of consultations with Dr Jack utilising the compassionate care and navigation area of the charity. He helped to guide us through the complexities of finding treatments and trials. He pointed us in the direction of treatments and doctors that we hadn't heard of as well as reassuring us about choices we had already made.
Since the time we were in touch with them, ACT for Cancer Foundation now provides information through their INFO HUB (beta-launch in late Autumn 2022) and this will be the go-to resource on how to access novel and experimental treatments and trials, that are outside the standard of care, for patients with hard-to-treat cancers.
ACT for Cancer is based in London but all consultations were on zoom. The service is funded by generous individuals and institutions who also believe in changing the way cancer treatment is delivered. For each consultation we had we gave a donation so that the service could continue.
We could have scheduled more regular calls with Dr Jack to help to guide us more. ACT Above & Beyond is now the dedicated service for one-to-one patient navigation and advisory consultations with Dr Jack Kreindler and Cordelia Taylor which 100% we would have used if they were formed when Stu was first diagnosed. Until a cure is found this is the missing key that I wish we had had access to. We may have been reluctant to spend money on a Patient Navigator to begin with but actually the amount of time that researching took away from me spending quality time with Stu away from the computer/phone would have been worth every pound. That’s precious time that we can't get back now.
You can find more information about ACT Above and Beyond here.