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'Cystic Fibrosis… moving stats' blog discussion
Former_MSE_Lawrence
Former MSE 975 Posts
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This is the discussion to link on the back of Martin's blog. Please read the blog first, as this discussion follows it.
Read Martin's 'Cystic Fibrosis… moving stats' Blog.
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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...
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.
give lots and you will always recieve lots
Im glad you know about this Martin, and I hope that it will help raise awareness... and lots of donations to the trust.
The facts that you have supplied are completely in line with what the hospital has told us, we are very lucky that we live in Belfast, Northern Ireland as there is a centre of excellence for CF at the Royal Victoria Hospital and the staff there have been superb.
We can only pray that the more CF is highlighted the more funds for further research and management are raised.
They were both unfortunate with their timings of birth in that they were born just as medical advances started and they followed just behind the wave of new techniques and drugs all the way along, unfortunately, always being slightly too poorly to make the most of them as the physical damage had already been done.
My mother has spent most of her adult life (at least since she had the children) raising funds for the CF Trust, so your blog was a welcome reminder that money is always needed for the research and anything that increases awareness is good. My early life was a continuous rota of coffee mornings, jumble sales and home visits - getting dragged everywhere. I had the misfortune to (nearly) make new friends all the time - only to be told that "such and such has died so you won't see him/her any more..." I must have seen a dozen children go in our small corner of Northumberland so I'm very well aware of the seriousness of this horrible illness. I'm grateful for witnessing many scenes of fortitude and inner strength that most people don't see very often.
One fact that really irked my brother and sister, and that your poster SuzySF points out, is that they had to pay all their lives for their drugs - until the very end when the Vancomycin and Heroin were free.... This is especially ironic to me now, as I have been diagnosed with an under-active thyroid gland - which means I get free prescriptions for life! I'll probably live to at least 70, cycling every day etc etc. My brother and sister had a job to walk to the chemists to pay!
It's a funny old world.
Just like to echo Suzy's sentiments about Labour's promise to add Cf to the list of illness exempt from prescription charges. To date it is still not exempt. It makes me furious. I wonder if Gordon will do anything?!
Thanks again Martin!
there's a blog i read from a mother of 2 with CF in east anglia (norfolk i think) where i often read of her struggles with money - i pointed her in this direction and i hope she has found MSE and found some useful info.
i'm shocked the it's not on the exempt list :mad:. diabetes needs daily meds and monitor equipment and thats exempt (step dad is) - so why is CF any different??!!
Rejuvenate, Reinvent.......
My partner of 4 years has CF. He is 34 and we plan to marry at the end of next year.
Money is tight and we live in fear of him catching a bug. We own our house but he can't get any Life cover we could afford. When we go away travel ins costs a small fortune and obviously the prescription charges mount up too! We were hoping too that the charges would be dropped but also we understand CF isn't recognised for things like disablity claims if he's off work? He doesn't get sick pay.Thankfully the most time he's had off sick has been a couple of weeks. We consider ourselves really lucky as he's quite well most of the time. But it is a worry at the back of your mind. Anyway i do't want to sound like doom and gloom as he's a really positive person and plans to do a skyjump for CF soon! It's nice to read other people are in the same boat as you x
My partner has CF and she has CF related diabetes and gets free prescriptions, if he has CFD then he should be exempt from prescription charges. It's disgraceful that CF suffers have to pay for prescriptions considering the amount of medication that is required. OH has DNase which are £20 per vial :eek: not to mention the mounds of other stuff she needs to take.
me and OH were on local telly a month back and a little bit is about CF but the rest is about my arduous claim for carers allowance.
http://news.bbc.co.uk/1/hi/england/7390612.stm