You can’t help how you feel and I’m feeling frustrated. I was frustrated before I came here about numerous things. I feel this post may turn into bit of a rant so if you only want hearts and flowers don’t read on.
A few months ago I was asked, on the back of the training I delivered, to speak to school nurses about HPV at one of their training events. I was very up for doing this. It would of involved a 150 mile round trip, a missed day of paid work, plus extra time to plan and prepare what I would deliver. I didn’t want paying, I didn’t want reimbursement for lost pay, I just wanted travel expenses so I wasn’t further out of pocket. I contacted two very relevant charities, both of whom I had done work for before, and neither could pay me the, top estimate, £50 mileage allowance. So keen was I to deliver the training I agreed to go for free, out of my own pocket. Unfortunately I didn’t go in the end as it clashed with a job interview.
Also a few months ago I was interviewed by another charity, in depth, over the phone. I told my story, which as you know is fairly intimate, with the intention of it being used to raise awareness during Gynae cancer awareness month. I was told that I would be contacted with a copy of the story and that it would be used for awareness purposes. I did not hear from that charity again except for a general mass email a couple of days ago about a fundraising event. I’ve put them straight.
More recently it was announced that a charity had asked another charity to produce lesson plans for secondary age pupils around HPV. I spoke to the head of education at the charity that had produced the lesson plans offering my services, for free, to go into schools and deliver them. Apparently they aren’t going to be delivered, they are going to be available to schools in a pack. Any teacher knows that 99.9% of lesson plans produced by organisations and never delivered and sit in dusty files on a shelf in the staff room.
Today I’ve heard of yet more clever stuff being researched, by experts flown in from all over the world. I’ve sat with people who like myself have had their accommodation, travel and conference attendance paid for by cancer charities and research institutes. I hope we are all offering value for money. I reckon my £50 petrol money to talk to the school nurses would have yielded a better return pound for pound.
I spoke to the Director of the CRUK Institute in Manchester. I really will talk to anyone! I told him that vast sums of money being spent on research I’d heard about earlier that adds a month to someones life might not be the best use of funds, maybe more funds should be spent on mental health services for survivors, support for primary care to deal with post treatment side effects, for more patient involvement. Real patient involvement not ‘tick box’ tokenism. I do say it how I see it.
Should cancer research funds be all about finding a cure, or with more and more people surviving cancer should there be more money spent on how to support people living beyond cancer and into education into how to prevent it. Should the site specific cancer charities be asking patients what WE want their funds to be spent on? Or should they make the decisions for us?