Almost 2 months ago now I met The Prof & he casually mentioned would I like to be involved in a panel that looked into clinical trials at Oxford…..
…obviously I leapt at the chance…..yet what with a work/life juggle & that month long mindblip and serious panic fest over a non-existent swollen lymph node this amazing opportunity has barely registered since then.
Until all of a sudden I found myself in London (not Oxford)walking into a meeting venue to join this “panel”…..a room full of 35 (ish)other people pulled together by the senior nurses from what patients like me refer to as centres of excellence.
News flash…not all hospitals in the UK are the same…..I know you fell off your chair in shock right!!!
OK – effectively there are 18 centres (hospitals) across the UK that are deemed as “centres of excellence” – in that they are at the forefront of treatments…they undertake Clinical trials – they are more often than not very linked to the universities within the towns they are located – and those universities have extremely good scientific reputations.
Despite the fact that it is now the 6th most common cancer in the UK Melanoma remains a killer.
For me….for hundreds and thousands like me….clinical trials are our only hope. So I am – as you know – a massive fan of research, of clinical trials & of being at the front of medical innovation.
The success or failure of clinical trials can be affected by many things….getting patients onto trials…getting feedback from patients…communication between centres, staff and patients…centres are now obligated (rightly so) to involve patients at all levels of their care in order to obtain funding.
The group that I have been invited to join is formed by the Experimental Cancer Medicine Centres. The remit of the ECMC is to improve patient access to early stage clinical trials….as a general rule patients that participate in these early stage trials have a limited life…so the group is founded to help make that happen in a uniform efficient manner.
The idea is that each centres working group…will feed into the larger network. Share ideas. Create efficient best practice systems – designed by patients. The Oxford ECMC is helmed by Nikki Hayward…The Prof told her that I might be keen to be involved….I already believe that Oxford does a lot of stuff “right”…so to be involved in promoting and improving upon what is already offered at the Churchill is a no brainer…I am treated there – of course I want it to be the best . But how effective a group can be in streamlining & unifying the systems and strategies of other centres remains to be seen.
The concern for me with groups and panels has always been that potentially you could chuck together a group of people who frankly have too much time on their hands….who need to “be involved” and who want to obtain the kudos or self-satisfaction from saying that they are involved in a “committee that reviews clinical trials” and all that effectively happens is that they meet on a frequent basis to natter…to discuss for endless hours the issues faced and then meetings end with a “lets review this”….or “lets create a report”…and then another 6 months pass and nobody actually achieves anything.
I don’t want to be part of a panel like that.
I don’t want to sit and talk about problems – I want to hear solutions – and put systems in place to make those solutions become easily accessible by other hospitals…and other patients.
…So that never again there will be a patient….let’s call her “Imogen”…who isn’t told instantly by the hospital that diagnose her Melanoma what her options are….who isn’t informed about clinical trials and what they could mean for her…who isn’t told what treatments are available in other hospitals if the hospital she is based at don’t treat her particular cancer very often.
Patients shouldn’t HAVE to rely on their own gumption….they shouldn’t have to fight the system.
They do. I have…..or rather….I did…..and now I have Oxford….and this team of people who live and breathe treating, researching and fighting cancer for patients like me.
These centres in turn need patients…like me…to help them….to tell others about the amazing work they do….to help promote trials…to review trials….to provide support.
This isn’t about designing a clinical trial….this is about making a clinical trial work for the patient….and if this group achieves what it aims to…then all Cancer patients…not just Melanoma patients will have access to better…more successful clinical trials for years to come.