Recently I asked my oncologist in Cardiff and the Vale whether I could be referred to a clinical trial in Bristol called DESKTOP. She was dismissive and said I wouldn't be eligible but her argument was flawed even to my untrained ear. I asked whether I couldn't be referred to Bristol just for an opinion for my eligibility and she then said she couldn't comment on the trial but that they were working on putting it in place in Wales.
My oncologist then referred me to another trial at the Marsden which would have given me access to Avastin. I rang the RM and spoke to a secretary there who told me there was a funding problem. I decided to move and I am now a patient at the Royal Marsden who say I'm a candidate for DESKTOP and I've started the process of joining the trial.
I'd just like to know if anyone else has experienced negative responses to requests to join clinical trials outside their immediate NHS Trust. I checked with Cancer Research UK and the National Cancer Research Network UK and apparently UK residents are entitled to join clinical trials anywhere in the UK. This helps to fill trials with the best patients, it helps patients access new treatments regardless of their home location, and you'd think it would help the oncologist from the referring hospital who would then have first-hand experience in leading-edge clinical trials that aren't available in their local health service.
Cancer Research UK and the Cancer Research Network UK are looking into what caused the block and they are interested to hear of any other similar experiences.
Please let me know if you have had a similar experience. Thanks so much. xx