Blocked from taking part in research.
I recently read a newsletter distributed by a local research network and a study caught my eye. The topic of the study was very relevant to me and offered an interesting opportunity to try a non invasive treatment. I had previously been recommended to have surgery for my condition and so this appealed as it looked like a possible alternative. Also the condition I have affects others in my family and I would like the chance to contribute my experience if it may help others in the future. I contacted the research team direct based at local hospital who were very helpful and gave me the information I needed – it looked like I would be eligible. However, I was told I would need a referral from my GP. So I made a non urgent appointment and waited 2 weeks for this. I enthusiastically shared the information about the study with the clinician who could see my medical history in my notes and recognise that this would be very relevant for me. However, I was a bit surprised to hear that I could not be referred to this local service, since the practice refer elsewhere. I don’t really understand Patient Choice, but this response confused me. I feel very disappointed that my surgery did not understand enough about how research recruitment works and that effectively they have acted in my opinion as gate keepers to research. I also think that this is very short sighted as this study could possibly have introduced me to a novel treatment which just possibly may prevent the need for surgery in the future if successful!