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Ann Carter’s Personal Views on NICE and Newly Diagnosed High Grade Glioma (extract)
I keep reading that the cost of these new treatments is too high for such short term benefits:some think that Temodal may only extend life by a few months so it isn't worth the outlay.
My twenty-one year old daughter, Laura, was worth every penny to us. And a couple of months of reasonable quality of life would have benefitted her and us. This new therapy could have made the difference between her going for that last holiday with her partner
( which she was too ill to do before she died). It could have meant that we knew what she wanted to do with her work insurance money (something else we never had time to discuss with her as it just didn't seem the right thing to do at the time). Did she want to be buried or cremated? Something that at twenty-one we never got round to discussing with her. But all this would have been made easier for Laura, and for us who were left to deal with it all afterwards, had she had those extra months of quality time to get her life in order, and time to think about it.
If the people at NICE who make these decisions about whether or not to make these treatments available were in our position, it would place everything into a new perspective. I still ask myself, 'have I done the right things? Is this what she would have wanted?' And the truth is we will never know, because this cruel illness robbed us of an extremely bright young person. If all the effort you and the rest of the charities are making help just one person to be spared any of what we had to deal with, then it is all worthwhile.
Brain Tumour UK Website: braintumouruk.org.uk