I have just looked at the BBC Homepage and it has under' News 'on the top left of the page an article about,
DRUG APPROVAL FOR THE NHS TO SPEED UP.
worth a read, talks about NICE and Postcode Lottery and at the end of the article it said,
Have You Been Refused a Drug,
How will these changes affect you,
Have you had to wait for approval of a certain drug.
So Tomdog and I emailed them and told them his sorry tale, and we have just had a phonecall to ask if it is alright to pass our details on, of course we said yes, as any media attention to highlight what some cancer sufferers are going through is of benefit to all.
Just thought it might be of interest to any other people who are having funding problems, maybe you would also like to add your own comments/weight to the issue on the BBC site.www.bbc.co.uk
Steffy & Tomdog
FormerMember
Yes, think BBC are having a big splash about NHS at moment because of the 60th anniversary, and I really hope that this may lead to the sort of offer for you that I had, namely to appear on film nationally. Boy would that embarrass your PCT! Don't forget to drop this into the conversation tomorrow, as for some reason :) the NHS seems to be galvanised by the prospect of their failures being broadcast... xxx Penny
I think I will mention it, depends on how they act towards us, if they say they have changed their minds I will say thank you and behave, but if they give me the same old claptrap I will challenge them. 60 years of the NHS and we have paid in for 40 of those years(each), and they will not fund Tomdog, he is not cost effect. Morally wrong when there is no other treatment available.
saw that today before we went out, and was going to pm you about it, i am so glad that you found it and lets hope it gives you a little more ammunition to use at your meeting tomorrow, "no drugs, then the bbc get the whole story" xxxxxxxxxx will be thinking of you both tomorrow
Thanks Alison, I have been sitting all day trying to rehearse what I want to say to them, Tom as ever 'the laid back one' says, don't know why your bothering, they will say something you disagree with and you will let them have it, you will let go of pent up fury that has been gathering momentum for 7 months, he is probably right, but I don't want to lose my temper, just ask some very pointed questions and challenge them on some written comments they have made, see where it takes us. Will probably write about it all tomorrow.
please please please use the phone call from the bbc to threaten the buggers with, the last thing your pct will want is for the story to get on the tv, honest, so use it well, see it as a gift from the gods, how can they refuse now after that programme and the threat of the exposure if they don't, i would love to be a fly on the wall at this meeting xxxxxxxxxxx hope its before i have to go for my appointments tomorrow, else my nails will be bitten down to the quick xxxxxxxxxxx
love to you both as ever, thinking about you both xxxxxxxxx
