GRRRRRRRRRRRRRRRR More Claptrap!

[Deanne Jenkyns]

Was surfing the net and found this on Curley's Blog! It is reffering to the news covarage we got when Jimmy's ex onc showed us the door! IT has really peed me off! When you read it you will see why! My reply is the last one



I’m sorry the relationship between this gentleman and his consultant “broke down”. Tonight’s news demonstrated how little people know regarding specialist nurses. He should and could have given specialist nurses a better remit..the comment I believe was “I can see the specialist nurse but that’s not the consultant is it?”
To the best of my knowledge his specialist nurse is an expert and very well equipped to help.I understand his frustration at having to pay for his treatment but he could have discussed this with his “Specialsit nurse” and used him/her as an advocate. It ain’t easy but worked for one of my patients!!!
If this gentleman had been given the drug and it had not been so “beneficial” his consuktant could be facing a manslaughter charge or at the least litgation. Haven’t patients shot themselves in the foot by persuing for blood money rather than treatment money?

Comment by Specialist Nurse-NHS forever!! — July 25, 2007 @ 10:21 pm

this drug is in phase three trials;not fully licenced,it is currently being used off licence;phase three trials show some remission in 6/10 patients.see www.cancer research.org for further information

Comment by Specialist Nurse-NHS forever!! — July 25, 2007 @ 10:30 pm

I am not quite sure what you mean about the consultant facing a manslaughter charge. Tarceva is a licenced treatment in EU countries including Scotland for goodness sake! Docetaxol an alternative to Tarceva has far more serious side affects and is much more toxic to the body.

Quote
I understand his frustration at having to pay for his treatment but he could have discussed this with his “Specialsit nurse” and used him/her as an advocate. It ain’t easy but worked for one of my patients!!!

We were never approached by his specialist nurse about the situation with the Tarceva or offered any support regarding Tarceva from STDH! The oncologist he is under now in Newcastle is fighting our corner and far more supportive in that fact that Jimmy should have Tarceva on the NHS. All we got from the las oncologist at south tyneside district hospital was my hands are tied these guys pay my wages! And that we had to be reffered to sunderland as no one in Newcastle would touch us! We were then approached from a consultant from Newcastle…we did not approach him! I knew that he was going to be on our side for otherwise he would not have contacted us! As for it being in phase three trials? It’s an approved drug, but NICE will not issue guidelines it is actually up to the PCT if they fund it or not! Other PCT’s are doing just that! In other words post code lottery!

Comment by Deanne — September 1, 2007 @ 9:52 pm

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[phillipa]

Oh boy, some-one shooting from lip, without checkng ALL facts regarding Jimmy's case.

Speaking of specialist nurses, NO they don't know everything and are certainly not up to date with developments as we have found out. We have been assigned a specialist nurse at Addenbrookes and she has yet to show her face...We know the specialist nurses at papworth and they have admitted they have not heard of some of the treatments we have researched.

I do hope some of them read this site and realise that sometimes the patients might know a little bit more. Perhaps they might realise their patients are also medically trained.

[phillipa]

Deanne can we have the link to Curly's Blog?

[Deanne Jenkyns]

hi phillipa,
here is the link,
curly15.wordpress.com/2007/04/12/postcode-lottery-for-cancer-drugs/#comment-11559

[Vicky]

OMG Deanne, i've just read through the the responses on this website and i am absolutely stunned at how ignorant some people are.. i am at a total loss for words honey!! I think yours and Jimmy's replies were spot on i'm just annoyed on your behalf that you are having to once again deal with insensitive, igornant individuals who have no understanding what it would be like to be in your position.. lets hope they never have to find out!!!! I think you should put a link on of this site and let them come and voice their opinions with people who are infact in the same position as you and Jimmy maybe then they will stop and think about what they are actually saying!!! NHS forever... what a joke!!!!!!!

Grrrrrrr so angry for you honey!!!!

Lotsa love and big ((hugs))

Vicky xxxxxxxxxxx

[Deanne Jenkyns]

Hiya Vicky,
It had my blood boiling last night, the fact that they obviously don't know that Tarceva is an approved drug was enough to p me off! Nobody knows what it is like to be in the position we are not unless of course they are in that very same position. How quick people are to judge, what if it were their husband, wife, child ,farther or relative...what then? Would they accept the fact they are being denied approved drugs when someone else living under a different post code gets it for free! I just hope they are never in the position we are some day!

Deanne
xxx


Deanne
xxx

[Vicky]

Hi Deanne,

I can only imagine how upset and angry this must have made you.. and completely understandable honey!!!

I just said to Luke that i always thought when someone was diagnosed with cancer the support and sympathy would be endless from anyone with a heart... oh how my eyes are being opened by the heartless, insensitive, unsympathetic and ignorant people in this world.. it is absolutely outragous!! Like you say i wonder if the boot was on the other foot how they would feel in your position... i guarantee they wouldn't have half the strength that you and Jimmy have!!

Keep your chin up hun.. i'm right by your side as always.

Love you lots and big ((hugs))

Vicky xxxxxxxxx

[phillipa]

I have posted and thrown my two penneth worth in, it was aimed at Specialst Nurse.

[Deanne Jenkyns]

Well said!

[phillipa]

I just had to have another go regarding specialist nurses. Have yet to meet the one at Addenbrookes.

[Deanne Jenkyns]

Hi Phillipa,
Read what you said well done ;D


Joanne,
Thanks for adding your comments too sending you ((((hugs))) makes me so angy that patients are not been told about new treatments even though the Dr's know they can be beneficial!


Take care
Deanne
xxxx

[nicki]

Oh how lovely Deanne. GRRRRRRRRRRRRRRRRRRR

Cant believe you have found comments about Jimmy like this, from someone who obviously does not know all the facts about your situation. How upsetting for you, no wonder you are so angry. Makes me angry for you.

Your comments back were very good though, much more controlled and reserved than I would have been! lol

Right behind you fighting as always (((hugs)))

Love Nicki
xxx

[nicki]

Ps Just read the comments from everyone else and well done to you all for speaking up the truth. It says it all that so far the 'specialist nurse' has not responded!! hmmmmm......

Great reply Jimmy, spoken right from your heart. OOOH I am so mad for you all.

By the way, who is Curly?

Love Nicki
xxx

[Deanne Jenkyns]

Hiya Nicki,
How could they respond to that Any way...who care will just be more claptrap ;D Curley is a local lad who runs a political blog website. He is actually a friend of ours and has been very supportive. This did upset me but now I just see it for what it is....someone who has no idea! The comments they have recieved have shown them up for what they are clueless!


Thanks Nicki
You have always been there for me ((((hugs))))
Deanne
xxx

[joannejopling]

Hi Deanne & Jimmy

I know i don't say a lot on here, but when I saw that link, and the words from that specialist nurse, well sorry my blood boiled a bit , lol had to delete most of what i did say

You know what its not up to the patients to do their own research, this information should freely be available to patients, not hidden from them.

and my experience of the nurses was, that they just sat and nodded their heads at anything the consultant says, It makes me wonder if there should be a independent nurse available to cancer patients , not governed by money, hospitals, policy's and procedures.

At the end of the day Dave went quick and quite unexpected by anyone, and thats what he wanted, he couldn't handle being ill, in addition to being told that there was no hope what so ever. He was ready to go, but for me...... I'm forever left with the 'what if'

it seems we have no rights, and consultants/nurses alike must look at you and think are you 'worth it ? '
thats no way to treat any human being.

Love to you both and looking forward to the Ball, catching up and grabbing a hug for real from you both x x x x

Joanne x

[Deanne Jenkyns]

Joanne,
It's outrageous that patients have to do their own research and are not told about different treatment options simply because of cost! When Jimmy was 1st diagnosed I never in a million years expected to find ourselves fighting for the right kind of care. I have spoke to many others who did not know about and were not told about Tarceva and many found out about it too late. It sickens me to the stomach that relatives are now living with what if? It's bad enough having to cope with your own grief without that hanging over your head. It is not acceptable that patients are finding themselves at war with PCT's and not been told about up to date treatments.


Take care (((hugs)))
Deanne
xxx