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Post by Deanne Jenkyns on Sept 12, 2007 12:41:38 GMT 1
I am so mad right now! As you know a hearing was supposed to take place on Monday re my husbands case! I emailed them Monday evening telling them basically that we were anxious to hear the outcome! No acknowledgment so I decided to ring them myself to see what was happening and because I was angry about not receiving an email acknowledgment! I got ...oh the meeting did not take place on Monday as planned it went ahead late yesterday but they need to get an opinion of a non exec!!!! I was in fact speechless, which is unlike me. I have just emailed them expressing in so many words how angry I am and how unprofessional this all is. Is it too much to ask to be treat with dignity and respect! Do they not know the importance of this! Obviously not!
Deanne
x
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Vicky
Full Member
Here to support Deanne & Jimmy!!
Posts: 127
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Post by Vicky on Sept 12, 2007 12:55:29 GMT 1
Hiya Deanne,
I am still in absolute shock at how you are both being treated.. it is disgusting!!! Yet again you have been let down by these incompetent 'professionals' i am not surprised you are angry honey!!
I'm glad you emailed them expressing your anger regarding this.. will be interesting to see if they acknowledge this email??
Sending you all my love hun and a big big hug... we are waiting anxiously right by your side.. hopefully for some good news!!!
I'll speak to you later.. keep your chin up.
Love to you both,
Vicky xxxxxxxx
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nicki
New Member
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Post by nicki on Sept 12, 2007 16:49:08 GMT 1
Oh Deanne, not again, you are constantly being let down with all this and it seems to get worse. No wonder you are so angry, I would feel the same too, like you say its as if it is not an importance for them, but at the very least they could have let you know the meeting was cancelled. Dont they realise what stress they are putting you through?  I agree with what was written on other thread about money for pg women, its a complete joke, I could think of much better things that money could be spent on, its ridicilous how certain things take priority over more important issues. Hope you hear something very soon and it better be good news....or else! Love and big hugs Nicki xxx |
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Post by Deanne Jenkyns on Sept 12, 2007 16:58:08 GMT 1
Thanks Vicky and Nicki, No news still...i tell ya my nerves are shot! I am just so sick of all this it is wearing me down again  the fact that we have to do this in the 1st place is beyond belief. I feel is if everything is a bloody fight, even to get some respect! I feel so angry! I received an email this am from someone who is in the same position fighting for another drug I get them daily, it is a joke the amount of people are having to fight for drugs! She said he was able to get them in October! October for goodness sake! Why not now! Thanks again guys sorry for the rant  Deanne xxx |
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Vicky
Full Member
Here to support Deanne & Jimmy!!
Posts: 127
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Post by Vicky on Sept 12, 2007 17:44:16 GMT 1
Awww Deanne, my heart just breaks for you hun, i hate seeing you go through this and i'm so angry that you and Jimmy are being treated like this.. i wish there was something i could do honey.. if i could i'd stick a rocket up their butts!!!!!!! and thats being polite!!!!!  I'm always here for you both.. just think i'll be able to give you the biggest hug in a couple of days. Love you honey, Vicky xxxxxxxx |
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Post by dtay on Sept 12, 2007 20:53:27 GMT 1
Deanne - have been thinking of you both when I was sitting at work today. It is totally appaling the way you have been treated - no news is good news tho - keeping fingers and toes crossed.
xxx
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nicki
New Member
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Post by nicki on Sept 13, 2007 20:16:30 GMT 1
Aww Deanne
What a nightmare, its a constant battle for you and by the sounds of it there are so many others in a similar position as you are. Its just not right, its peoples lives!!!
Have you heard anything today?
Big hugs
Love Nicki
xxx
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Post by Deanne Jenkyns on Sept 17, 2007 14:10:03 GMT 1
Update,
Apparently, the PCT are taking this before the NCN (northern Cancer Network) I have not heard of this being done before and I have questioned this? I have always been told that it was the PCT's decision whether or not they would fund drugs. Apparently it's complicated because if they give it to Jimmy their fears are they would have to give it to everyone, create a precedence. Other PCT's have funded the drug and that has not set a precedence so what the difference is here I do not know??? Everyone should have access to it. It is an approved drug for goodness sake! If they say no...I will be making plenty of noise. In my opinion they are not following the correct procedure and they are changing the rules as they go along!
Deanne
x
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Post by phillipa on Sept 17, 2007 16:59:57 GMT 1
I would love to say something, but it could end up libellous. Bunch of cowards,, taking it the the Canver Network, the hide behind this all the time, oif the West Anglia Cancer Network dictates anything in this area, regarding treatment, that is it. This si the rubbbish we wer handed when we lodged out complaint regardinf kent's treat with the prostate cancer. It reminds me of 'the computer says NO'. So what, don't they have the iintestinal fortitude to make an independent decision instead of passing the buck and letting someone else make the decison for them....rissoles.....
Deanne if you want a loud mouth old Sheila to strangle someone, ket me know....
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Post by dtay on Sept 17, 2007 16:59:58 GMT 1
Thinking of you both xx
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nicki
New Member
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Post by nicki on Sept 17, 2007 22:55:52 GMT 1
Deanne
Well I was logging on to hopefully find you had finally got a decision but nothing is straigtforward in this nightmare is it? I cant believe that yet again are you having to deal with confusing stuff and change in usual proceedure.
Wish I could advise you but can send you a massive hug instead (((hug)))
On a lighter note - How was Grease?
Love Nicki
xxx
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Post by norfolkbirdie on Sept 17, 2007 23:31:52 GMT 1
Deanne
Isn't it amazing how they can waste so much time,money dragging this out when it would have cost them less to approve it in the beginning!! I am so sorry they haven't done the right thing and are making you wait even more.
Ros
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Post by Deanne Jenkyns on Sept 18, 2007 10:41:27 GMT 1
Hi all, I will update as soon as I know anything  Nicki, Grease was fantastic! I was like a wide eyed child the entire time scared in cas I missed anything! The whole weekend was fab. Vicky has posted some pictures on may-b-baby Deanne xxx |
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Post by Deanne Jenkyns on Sept 19, 2007 15:04:23 GMT 1
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Vicky
Full Member
Here to support Deanne & Jimmy!!
Posts: 127
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Post by Vicky on Sept 19, 2007 15:47:23 GMT 1
Hi Deanne,
I know we have already spoken but i just want to send you some big (((hugs))) i wont rant on about how bloody annoyed its got me.. the way you are being treated is a disgrace!!!
Goes without saying that Luke and i are wishing you both lots of good luck for Friday... i hope you get some answers.. how they can keep you hanging on like this is beyond belief.
You know where i am hun.. anytime!!!!!
Lotsa love always,
Vicky xxxxxxx
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LC charity Ball
the fact that we have to do this in the 1st place is beyond belief. I feel is if everything is a bloody fight, even to get some respect! I feel so angry! I received an email this am from someone who is in the same position fighting for another drug I get them daily, it is a joke the amount of people are having to fight for drugs! She said he was able to get them in October! October for goodness sake! Why not now! 
