Wednesday, 27 August 2008

NICE demonstration 27/8/2008

It was a pretty early start for Catherine and I.  We had to be in Oxford to meet the coach that would be taking us, along with about 30 other protesters, to London at 9.30am  Fortunately for once the M42 and M40 were clear and we zipped down there and arrived at the meeting place nice and early.

Several people were already there, including members of the local press, and we were soon swept up in having photos taken and being interviewed.  It was a most peculiar feeling to be honest.  I did an interview for Radio Oxford (I have no idea if it was aired !)

Our numbers soon swelled to about 30 and I met up with other patients I 'knew' from the KCUK forum - this was lovely, to actually meet other patients who were going through the same experience.  It was easy to spot those of us who were taking Sutent by the white eyebrows !

A couple of photographers and a reporter came with us on the coach for the journey down to Holborn where NICE headquarters are.

We piled off the coach almost straight outside the building and met up with others who had made their own way there - there were over 70 of us protesters by this time - patients, relatives and supporters.

We all trooped over to the steps of the building, a big glass fronted affair, and positioned ourselves in front of it.  Most wearing T shirts, all waving posters - and on a very busy high street which caused much interest from passing motorists with lots of tooting of horns and waving and shouting.

Then James Whale arrived - complete with a positive throng of press and within minutes cameras were snapping, films were rolling and reporters were interviewing the patients there.  Catherine, who had been an absolutely star all day, was interviewed by a reporter from The Guardian - I didnt really hear what she was saying but it ended with her in tears after being asked to describe what it was like to have a Mum with kidney cancer.  Bless her, it was a very emotional day all round.

James addressed us and we decided to enter the offices and see if anyone from NICE was prepared to come down and answer our questions - so we stormed the lobby !  Only to be met by 3 security men and 2 policemen.  We waited around for a bit but it was obvious no one was brave enough to come and face us.

So the protest slowly broke up after a couple of hours - but we had made our point in a very loud voice.  There was much media interest and the support from the public down there was fantastic - we even had people coming out of NICE's offices on their lunch break saying how much they sympathised with our cause.

I felt so proud to be there - to be representing the patients unable to get funding for these 4 drugs - to be representing the many too ill to travel down and protest themselves.

On the way home we decided this was only the beginning - Westminster next !




infectiia said...

well done!  

excellent pics!  i shall be looking for it today in the papers :o)

james whale has a big enough mouth so hopefully it will get to plenty people!!!

sybilsybil45 said...

Good on you... I do think that it is the only way to get anyone to take notice is to make as much noise as possible....I do hope ad pray that someone will see sense soon.  Love  Sybil xxx

jeadie05 said...

Very well done ! you have been featured on our network ,loved seeing you and the family Janxx

pharmolo said...

Well done, Jane. Indeed, Westminster next!

helmswondermom said...

I hope you are able to get some changes made!

funnyface0s0 said...

I am so proud of you and Catherine - well done for fighting your corner.  I admire your strength and tenacity and your courage to keep the fight going.   You're a Star :o)
Big Luv Jaynee X

lynnandkeith55 said...

admiration for standing up and shouting for what you believe in
go Jane
x Lynbo x

rjsisti said...

Congrats on being selected as one of the Editor's Picks!

Hugs, Rose

fisherkristina said...

I found your blog through Magic Smoke.  I think it's great that you are doing this sort of thing, and helping others, even while you are going through so much yourself.


rdautumnsage said...

Loved reading this entry. To sound out with a roar that you deserved better treatment. Westminster next indeed! Came by way of Mort to congratulate you on being a guest editor pick. (Hugs) Indigo

faircolleen said...

Im really proud of you and Catherine. . .yes Westminster next indeed!!Its a shame this has to be done though.

larryzzzz said...

Bloody well done !! And good on your daughter for being there to support her Mum too ! Chain yourself to Big ben next time !! Good luck xx

mortonlake said...

WAY TO GO JANE.   god  im gettin more american every  day,too many US  journals  and poker  lol.          maybe    just  maybe,if enough people shout,westminister will stop the lottery  that  is disease funding.      to tell someone,oh  your treatment is too costly,go away  and die         is the sign of a nations government  that  thinks  it is  above  the  people it represents,     it aint.   take care  love,going  to send this  to a mutual friend soon.       take care  love  mort,      you are an inspiration  jane.        

frankandmary said...

I would have been proud to be able to represent those who could not be there as well.  Perhaps more proud of that than of self-representation.
I'm here at Mort's suggestion & to say congrats on being a guest editor's pick. ~Mary

luvrte66 said...

Hi Jane, sounds like an exciting day, and that you made your voices heard loud and clear. Good for you!

Stopping by via Magic Smoke and Mort's Guest Editor picks.

All my best,