So what is a carrying-more-weight-than-is-good-for-me and not-quite-as-fit-as-I-would-like but otherwise healthy, active 50-something science geek doing on a Parkinsons blog?
Four years ago, after a long, protracted painful period of being treated for depression and anxiety, my Mum was diagnosed as a PWP. The care, support and information she has received since her diagnosis have been very impressive and I can’t thank Parkinson’s UK enough for their contribution to this. So that explains my interest in Parkinsons but that doesn’t explain why the EM-RSM is for me, does it?
My background is in biomedical science (I have a Masters degree in Haematology/Immunology) and I have spent the last 20 years working for the pharmaceutical industry in drug development and clinical research.
My clinical research experience is mainly in the development of anti-infective agents and anti-cancer products but I have worked across all stages of the drug development process and also collaborated with UK research networks and patient groups.
I believe that knowledge empowers people and have seen first-hand how patient power can influence and direct research and also impact on health policy, access to medicines and access to clinical trials.
I also believe that this should not just be limited to those people with a scientific/technical background and access to the internet. My Mum has no computer and no scientific background but she is interested in what is going on in Parkinsons research and I do my best to explain to her in non-technical terms what is being discussed at the research meetings. Just because of her lack of access and knowledge base should not mean that she is disenfranchised from the cutting edge of progress in Parkinson’s research. Access to clinical research and research information should be inclusive and not exclusive.
Patients should not need to stand up and shout loudest to secure appropriate levels of service, funding and treatment nor should healthcare be political but unfortunately, that is the world we live in and patients do need to fight for ever-decreasing funding pots with an ever-expanding ageing population. The EM-RSN is a vitally important organisation in this regard because together, as an enthusiastic, enlightened and enquiring group, we can influence the direction of research in the East Midlands and also attract clinical trials away from the main hubs and into our local hospitals; allowing PWPs in the region to have access to developmental drugs and the opportunity to make a contribution to the future of Parkinsons treatment.
I have spent many hours writing patient information sheets (heavily regulated and need to be at a reading age of 7) for participants in clinical trials, I have a deep understanding of the drug development process and its regulatory framework and am a passionate communicator (OK, so I like talking….), so here I am. Ready, willing and able to share information with the community.
Oh, and I forgot to mention that my other half is a PhD student (long after he should have retired) and is doing a very good job of reviewing a Parkinson’s Google alert then filtering out the chaff and sending me the articles on research that everyone might be interested in seeing too!