Patients have the drive and motivitation to search for the best care, so when we take time to do our research and work out what is causing frightening side effects, why don’t doctors listen to us? Admit that we know and understand what is causing problems.

Cancer charities could help us fight for the care politicians promise but never deliver.  Instead, we are given ‘My cancer journey’ stories.  Does anyone else wince when faced with yet another “how I suffered” tale?  We alI  know the reality of survivorship, we face multiple problems daily, but I don’t need to be reminded.  Of more use would be someone telling me of contacts that sort out problems;  a phone number to cut through red-tape; even help finding services.

Tips on how they get an appointment without waiting months; info on what I AM entitled to, how they got correct treatment for the vague but nasty side effects that appear after a new drug. Or did they listen to the doctor who told them “let’s wait and see”. or did they demand something be done? And what happened then?

I don’t want the cancer charity Helplines staffed with nurses repeating the NHS message.  I want a Helpline that has analysed information from around the world, especially from those countries where their cancer care is better.  Then gives me accurate information I can show to a doctor to tell them to get on with it and find out why we can’t get this in UK. Not to have to find it myslf, then wait to see a sceptical doctor who says they have never heard of this – until fellow patients thrust a computer print-out under their noses.

I want doctors like the one who listened to me when I told him how, three days after starting on Tamoxifen, I went blind in one eye. He took the trouble to look up what I had told him and wrote in his notes : “optic neuropathy is a recognised complication of this drug and I confess I had not heard of it before now”.  I showed this to another doctor dealing with another side effect, and he said it was so important that he took it off to have it scanned into my NHS notes.

What I would far rather read (cancer charities take note) – is David Gilbert’s book “The Patient Revolution”, about the way patients can make a vital contribution to our treatment.  But please – NO MORE sob stories – they don’t help me or produce better care.

At the Thames Valley Cancer Alliance conference, the next speaker was talking on her cancer story.  Luckily I was too tired to leave the room – because this was Kris Hallenga on how she founded Coppa Feel.  Inspirational, funny, sensible and practical – she set up a useful and helpful charity with practical ideas, and not one moan!  Brilliant!  and more use than an ‘inspirational’ story.

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