9th June - Manchester

Sat, 04/06/2011 - 5:42pm

As you know- 6 members are attending the appraisal committee meeting on Thursday 9th from 10- not sure?
The reason we are not sure is because the second part of the meeting, which will discuss the ACD for imatinib 'intolerant' patients, is now closed to the public. So we might get asked to leave before lunch, but certainly after the ACD for 'resistant' CML has been discussed .
There are ome other members who are travelling to Manchester to stand outside the NICE building in Piccadilly Gardens. We are planning to issue a press release regarding this to inform the media in the North West. If there are any members local to Manchester or who live within the North West area who wish to join in, then please do let us know.

sandy craine

In reply to sandy craine

Sun, 05/06/2011 - 6:43pm

Around 10 members will travel to Manchester on 9th. Anyone else willing to join in for such an important cause?

ni2i

In reply to sandy craine

Sun, 05/06/2011 - 7:06pm

Sandy i am going to try and book the day of work tomorrow to try and get there i will let you know tomoz

Thanks

Star

In reply to sandy craine

Mon, 06/06/2011 - 3:43pm

Hi,

I didn't sign up for the meeting as I'm going on holiday on Thurday afternoon. I can come and stand in Piccadilly Gardens until 11.30am though. What time will people be gathering there and where exactly? Do we need to bring a sandwich board or anything?!

David

In reply to sandy craine

Mon, 06/06/2011 - 6:46pm

Sandy - I would love to be part of a demo in Manchester but, unfortunately, I am tied up with some work. I hope the NICE meeting goes well.

Thank you again for everything that you are doing with the Petition, submissions to NICE and everything else.

Regards

David

PS I still have no replies to my letters from my MP or Sir Andrew Dillon.

EmChops

In reply to sandy craine

Tue, 07/06/2011 - 9:54am

I am sorry i can't come to manchester but I have an appointment with my consultant that afternoon in oxford. I will be watching the forum all morning to see how it goes. Thanks again for all your efforts.
em x

John M

In reply to sandy craine

Tue, 07/06/2011 - 10:21am

We will be in Leeds for the previous night, collecting son's clobber from Uni. I hope to come over for the first part but we have to return to Kent by the afternoon.

John

sandy craine

In reply to Star

Tue, 07/06/2011 - 2:11pm

Although this is not an official CMLSg protest but is entirely a grass-roots action from some of our members, you (and anyone else) are free to join in. I will forward you the email contacts of members who are doing this so you can check with them what time and exactly where hey are gathering. I am sure they would be happy if you would join them.

We (the 6 CMLSg members who are attending the meeting) are not sure when we will be asked to leave- part of the meeting will be closed to public observers. I imagine that the committee will have a lot to discuss so I guess that we will be finished around 12- but I can't say for sure.

I am also not sure if the entrance to the NICE offices is would constitute private property as it is not directly onto the street, but set back in a kind of atrium.

Best
Sandy

jackieb38

In reply to ni2i

Tue, 07/06/2011 - 2:43pm

I would've loved to have gone but I'll be in Birmingham seeing my hematologist on Thursday.
I hope it goes well.

Jackie

vickiep

In reply to jackieb38

Tue, 07/06/2011 - 6:53pm

Sorry...wish I were physically able to travel that far..good on you peeps for those that can be there. Many thanks
Vickie

Star

In reply to sandy craine

Wed, 08/06/2011 - 6:46pm

Today I did an interview and photo with the M.E.N. They are sending a reporter to the protest tomorrow and said they will put a story in the paper tomorrow and Friday, so fingers crossed.

BBC News North West are doing an interview with another CMLer tomorrow so it should be on the regional news too.

See you tomorrow in Picc Gardens.

spence11

In reply to sandy craine

Thu, 09/06/2011 - 10:02am

Just wanted to say good luck and thank you so much to all of you who will be in Manchester today. I'm so sorry I can't be there, and really appreciate everyone's efforts on my husband's behalf. Thank you.x

Star

In reply to Star

Thu, 09/06/2011 - 1:02pm

Just come home from the protest outside the NICE meeting and about to go on hols. Thought I would update you all first. We did interviews with BBC North West, Granada TV, Heather Stott Radio Show (BBC) and Manchester Evening News so I hope we put across the arguments clearly and get some good coverage. There is an interview with me in the Manchester Evening News today.

Unfortunately I had to leave before the patients came out of the NICE meeting so I don't know the verdict yet. Hopefully someone will update this. I will check whilst I am away.

It was great to meet everyone today and thanks for all your efforts and support. Lets hope we get a good outcome.

Stella