Jump to content
Gwynhafyr

I Need Your Help Guys

Recommended Posts

I have recently been diagnosed with Pulmonary Hypertension (PH) and my treatment and the treatment of those like me is now under threat.

 

Please could you read the following message and if you feel able to please click on the link and sign the petition.

 

I and hundreds like me will be very grateful.

 

Today (March the 3rd 2008) sees the publication of a set of preliminary recommendations made by the National Institute for Health & Clinical Excellence (NICE), which if implemented will mean people who in future are newly diagnosed with the life threatening lung disease Pulmonary Hypertension (PH), or existing PH patients requiring a change in their treatment regime, will have the options available to them curtailed.

 

NICE were not looking at the drugs used in the treatment of PAH and asking if they work or are safe because they are all licensed for the treatment of this disease. The questions they asked is this: Are the drugs cost effective and by this they mean is the benefit derived from the drugs worth paying for?

 

The charity PHA-UK (Pulmonary Hypertension Association UK) are mounting a challenge to these preliminary recommendations and we are trying to get as many people as humanely possible to sign an online petition in support of our campaign. If you click through the link below, you'll be able to find out more, sign the online petition and view a series of films on a cross section of patients who are on the treatments that NICE would deny future patients. We need to get as many people to sign up by the 24th of March, so we'd be grateful if you'd pass this email on to those you can trust to sign the online petition and send it on to others that they trust do the same.

 

http://www.pha-uk.com/petition_nice_introduction.asp

 

The treatment and care provided by the NHS via the 8 specialist centres throughout the UK is the envy of the world. PHA-UK want to keep it that way and ensure that PH patients have every treatment option available to them to provide the quality and quantity of life they deserve.

 

Thanks for your consideration.

Share this post


Link to post
Share on other sites

ditto

Share this post


Link to post
Share on other sites

Done. I hope Yanks count.

Share this post


Link to post
Share on other sites

Thank you, thank you, thank you. You don't know how much this means.

 

Yes Yanks do count. The American branch of the PHA are our biggest supporters.

 

I'm off to the House of Commons on Monday to represent people with the condition at a select committee meeting. The place is going to be packed with MP and Lords. I'm nervous as hell.

Share this post


Link to post
Share on other sites
I'm off to the House of Commons on Monday to represent people with the condition at a select committee meeting. The place is going to be packed with MP and Lords. I'm nervous as hell.

 

Good luck and I hope everything works out well in your favour.

Share this post


Link to post
Share on other sites

'tis done also.

 

Whilst you're at the Commons, you couldn't check the current health of some of the older Lords could you? :) Good luck!

Share this post


Link to post
Share on other sites

done....and good luck !

Share this post


Link to post
Share on other sites
Thank you, thank you, thank you. You don't know how much this means.

 

Yes Yanks do count. The American branch of the PHA are our biggest supporters.

 

I'm off to the House of Commons on Monday to represent people with the condition at a select committee meeting. The place is going to be packed with MP and Lords. I'm nervous as hell.

 

Done, and good luck on Monday. I've done select committees myself, and there's no need to get too nervous. Some hints, for ehat thet're worth:

 

1 - You know more than they do

 

2 - NICE will get a much tougher ride as they are publicly accountable.

 

3 - The setup looks inquisitorial, but the atmosphere generally isn't.

 

4 - If they ask something you don't know the answer to, just say so and offer to send the information later. That way, you can build up an ongoing dialogue.

 

5 - It's always quite warm in the committee rooms, so don't wear too many layers.

 

You'll do splendidly, I'm sure - I just hope they take note.

Share this post


Link to post
Share on other sites
Thank you, thank you, thank you. You don't know how much this means.

 

Yes Yanks do count. The American branch of the PHA are our biggest supporters.

 

I'm off to the House of Commons on Monday to represent people with the condition at a select committee meeting. The place is going to be packed with MP and Lords. I'm nervous as hell.

 

You'll do great, Gwyn. Just remember that they are all naked under their clothes and you really don't want them to take anything off. :)

Share this post


Link to post
Share on other sites

tis signed

Share this post


Link to post
Share on other sites
Thank you, thank you, thank you. You don't know how much this means.

 

Yes Yanks do count. The American branch of the PHA are our biggest supporters.

 

I'm off to the House of Commons on Monday to represent people with the condition at a select committee meeting. The place is going to be packed with MP and Lords. I'm nervous as hell.

 

Done, and good luck on Monday. I've done select committees myself, and there's no need to get too nervous. Some hints, for ehat thet're worth:

 

1 - You know more than they do

 

2 - NICE will get a much tougher ride as they are publicly accountable.

 

3 - The setup looks inquisitorial, but the atmosphere generally isn't.

 

4 - If they ask something you don't know the answer to, just say so and offer to send the information later. That way, you can build up an ongoing dialogue.

 

5 - It's always quite warm in the committee rooms, so don't wear too many layers.

 

You'll do splendidly, I'm sure - I just hope they take note.

 

Thank for this advice. It sounds a lot less imposing than I thought.

Share this post


Link to post
Share on other sites

Signed (only took about 20 seconds, so no excuse for anyone else)

 

Best of luck with the committee, and remember; they're only MP's, not anything special.

Share this post


Link to post
Share on other sites

Signed. Good luck!

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

  • Recently Browsing   0 members

    No registered users viewing this page.

×

Important Information

Your use of this forum is subject to our Terms of Use