'Cystic Fibrosis… moving stats' blog discussion

jennybridger

thank you - did do a search for one but nothing came up!

circlip

The link to this petition is

http://petitions.pm.gov.uk/cystic/

the petion is:
We the undersigned petition the Prime Minister to Remove NHS prescription charges for adult sufferers of Cystic Fibrosis.

More details
Submitted by Jenny Whitford – Deadline to sign up by: 10 September 2008 – Signatures: 453

only 453 signitures as of today 21/6/08


I would urge all who read this thread to follow the link and sign the petition.

if you sign an email is sent to your account, you have to click on the link contained in the email for your vote to count.

thank you to all who have signed the petition so far

jennybridger

i found an application on facebook which enables you to share and recommend petitions so have added that and it should have been sent to all my contacts.

i've joined some of the CF groups and done the same.

in the process i came across an old petition from september last year, and there was a link to the response the PM gave.....

http://www.pm.gov.uk/output/Page13271.asp

scotpics

My friend is running in The Great Scottish Run later in the year and is donating the money she raises to the Cystic Fibrosis Trust. You can donate online at https://www.justgiving.com/elainehepplewhite

Thanks to those who donate.

Sue_Morrison

Hi

My name is Sue & I work for EMS research.

We are conducting some PAID telephone interviews with patients with Cystic Fibrosis

Please call me to discuss further on

07932 997432

Thanks for your time
Regards
Sue

SuzySF wrote: »

re the Blog - I've read it - but i had no need to - i'm a CF - transplanted adult (Heart & Lungs 1991 aged 31 - now 47 !!)

yes its hard work, just doing physio to keep breathing !! but something that realllllyy reallllly bugs me is this ...the average survival age is now 31, due to massive progress made with antibiotic treatments and preventative medicine. What has'nt kept apace with this is the Governments acknolwedgement of this fact - we live longer. In the 1997 Labour manifesto that got them into government (Tony Blair) promised he would add Cf to the list of illness exempt from prescription charges (diabeties etc are on there). To date it is still not exempt..and Blair has retired with broken promises. We live in hope (as we do daily - it seems to come along with the defective gene that causes CF !!) that Gordon Brown will now honour that promise (after all he has a Cf child). I attend the Cf unit at Heartlands Hosp but live in Wales, I now luckily dont have to pay (free since April 2007) - previous to that I had a prepaymet certificate for a year....English Cf's over 16/18 (if in full time education) have to pay still. These drugs keep us alive and well..and beleive it or not even a transplant is exempt in England..even tho you would die without the anti-rejection drugs....

it's not like we dont have enough on our plates already !! it's adding insult to injury really. Of course the problem was - we didnt live past 16 so it didnt matter that Cf wasnt on the exempt list. IF we didnt do our antibiotics i.v's or inhaled, our pancreatic ensymes etc we'd be very ill...if a diabetic didt take their insulin - they would be very ill or die..whats the difference ???

On May 9th i organised a coffee morning for Cf it was Cf Week - we raised £200 in 2 hours....it not much but add lots of littles together and u make a big !

personally - i'm very well - had a bad winter with 2 hospitalisations for ii.v. antibiotics for chest infections, lost a lot of weight (goes with the illness ) now eating for britain and so far put on 4 lbs.....10 to go ... i am the envy of work colleagues all dieting for summer exposure - and i taunt them with cream cakes, chips, pies, chocolates and crisps... its got to have a up side hasnt it !!! rofl

to that end - Aldi and Lidl are fave food shops along with Tesco (points) - we dont have any here where i live so go on a big expedition monthly - got a big chest frezzer - freeze cheese, butter, cooked ham, big lasagnes etc.
they freeze really well

BIG THANK YOU MARTIN FOR MENTIONING CF - its whats known as an Orphan Charity..small. We dont get much recognition and they dont have money to splash on multimillion pound advertising like Oxfam, RSPCA, NSPCC etc. but are just as much in need of funding.