Appointment with MP

[Deanne Jenkyns]

Hi all,
Most of you will be aware that we won funding for Jimmy to use Tarceva through the PCT. We of course delighted but where does that leave other patients fighting for drugs?? The PCT in their statement to the press shut the door on other patients with their speech "This decision was made on an individual case basis only in response to personal circumstances presented by Mr Jenkyns.

"It has no implications regionally on whether or not Tarceva is provided generally on the NHS."

This infuriated me as when I first approached them I said that the funding should depend on a patient as a individual because all patients respond differently and they should all be given that chance! We also suggested that they give it to patients for 2 months and if they did not respond fair enough. You know quickly if Tarceva is working. All of this was of course dismissed! And now they are doing exactly what we suggested they do in the first place! I rang our MP David Milliband this morning and told them that something needs to be done about this post code lottery. We were fortunate enough to be able to fund for a while other patients are not and some have raised the funds and it has been to late. Patients are dying and something needs to be done about it! Their are many drugs being denied to patients, if you live in another area you may be able to get it is all wrong!! I have an appointment with David Milliband on the 26th October to discuss this in more detail. I am just letting all members and readers know that just because we have won funding for Jimmy I am still fighting for other patients.

Take care all
Deanne
x

[Vicky]

Hiya Deanne,

I am so proud to call you my friend your an amazing person, your fight for others when you are dealing with so much yourself just astonishes me... it shouldn't though as i have come to realise that you are the most caring, genine person i've ever met.

I've said it a million times but you make a huge difference in this sometimes cruel, heartless world... you are a light at the end of the tunnel for a lot of people.. including me under different circumstances.

Wishing you lots of good luck with your appointment with this MP i hope it has a positive outcome.. if anyone can make them see sense its you honey.

Love you always,

Vicky xxxxxxxxxxx

[Deanne Jenkyns]

Hiya Vicky,
It is not hard for me to fight for this cause. I know how desperate I felt and I know that others will be just as desperate as we are. Winning this drug has given me a huge boost and made me even more determined to help others. I have a good weapon the intenet. Having my own site lets me offer advice to people who do not not where to turn. even if people just come on here and read about our fight and the information I provide can give someone some hope or some light at the end of the tunnel it makes me happy. I received an email from a man the other day saying that I have no Idea how much the information on the website has helped him and his wife who has just started Tarceva that makes what I do worth while and is reward enough for me. I have also spoke to some and met some remarkable people. Talking to them not only helps me but it helps Jimmy too. Non of us know what is around the next corner anyone could find themselves in this position in the future I just hope that they are able to fight and find help to do so.


thanks vicky for you lovely post
Deanne
xxx

[dtay]

Deanne - I agree you are an amazing woman, thanks for all the hard work you put into this fight.
Lots of love
Dawn xx

[phillipa]

Deanne,

Thank you for this fight. David Milliband really needs to know what we are up against. please feel free to give him our contact details and if he needs Kent's file, we will willingly forward it. I have kept everything to date, he can also have a copy of my diary.

[wendy]

Hi Deanne and Jimmy
What a wonderful couple you are. maybe some of the MP's in this country could look at your inspiring website. Some of the postings bring tears to my eyes, but the courage shown by everyone at such stressful times in their lives is fantastic.
When I mailed my angry response to NICE I did mail to all the leaders of the main parties as well as the health spokesmen fot their respective parties. So far i have had no replies. The Roy Castle Lung foundation on the other hand responded straight away. People shouldn't have to battle like this!
Thnk you again
Wendy