I’ve had a post brewing for a while. You know how it is. You find your mind thinking about things, formulating ideas, analysing new data and information, having thoughts reinforced or challenged by new experiences. You wonder if the conclusions you are reaching are correct. You think about it when you are driving, when you’re in the shower, when you are sat in front of the telly not really watching it. You take long walks, you take long train journeys and you take your thoughts and ideas with you in your very well designed portable mind.
So here is a list of thoughts that need to be documented.
It is not right that only a fraction of cancer research uk funds are spent on actual research.
It is not right that the research ideas are solely formulated by academics who are pursuing their own agendas.
It is not right that there are 3 or 4 national organisations (funded by the taxpayer) that duplicate the same work, yet don’t communicate effectively with each other.
It is not right that in a group of 20 people deciding the direction of gynae cancer research there is only one nurse and two patients.
It is not right that it takes a patient representative i.e me to suggest inviting the main gynae cancer charities along to the meeting.
It is not right, considering the money available, that no one has a definitive contact list of say all the gynae clinical oncologists in the country. Or that there is a discussion about where a definitive list of all current gynae trials can be found (For both patients and clinicians) This is with representatives from all the major National research organisations
It is not right that vast areas of the country do not have hospitals where patients can access clinical trials.
It is not right that clinical trials fail due to lack of recruitment etc. A very costly waste of funds.
It is not right that the VAST majority of research funds are spent on very costly treatment trials (which will ultimately benefit pharmaceutical companies) and not on prevention, early diagnosis, education or survivorship or palliative research. Areas which Pharmaceutical companies cannot benefit from so profitably.
It is not right that the big cancer charities tell you that your donation will beat cancer sooner. It should say a fraction will be spent on trials , the rest will be spent on advertising, hospitality and ‘infrastructure’.
It is not right that the cancer community, the front line doctors and nurses and MOST importantly the patients don’t identify what they want answers to then TELL the people with the money who then find scientists willing to run the trials. Instead we have scientists chasing their own interests wasting time and money trying to find a trial that will get their position funded for another year.
It is not right that when I mention ‘value for money’ I get raised eyebrows from around the room from people who are on far more than my £80 a day for attending. (Yes I think I’m very good value for money)
It is not right that there are 5 main gynae cancers but 80% of the group are only interested in one.
It is not right that people walk away from an expensive meeting not really knowing what they have to DO.
There are so many other things that are wrong. So many. I think I’d better stop there before I get myself into trouble.