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  • SuzySF
    • #2
    • 31st May 08, 1:02 PM
    • #2
    • 31st May 08, 1:02 PM
    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 Ł200 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.
    What goes around - comes around
    give lots and you will always recieve lots
    • Drunkstar
    • By Drunkstar 1st Jun 08, 8:24 AM
    • 877 Posts
    • 571 Thanks
    Drunkstar
    • #3
    • 1st Jun 08, 8:24 AM
    • #3
    • 1st Jun 08, 8:24 AM
    My wife hs CF and so its, obviously, an important part of our lives. We have ran shows for the CF trust many times, making around Ł200 a go (not great, but evry little bit helps).

    Im glad you know about this Martin, and I hope that it will help raise awareness... and lots of donations to the trust.
    The "Bloodlust" Clique - Morally equal to all. Member 2
  • slobel@ntlworld.com
    • #4
    • 4th Jun 08, 7:30 AM
    CF blog
    • #4
    • 4th Jun 08, 7:30 AM
    I just want to thank you Martin for raising the awareness of this condition. I will admit that until two weeks ago I was completely ignorant of what CF entailed, that is until my new five week old grandaughter was diagnosed with it.
    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.
  • StrangelyPerfect
    • #5
    • 4th Jun 08, 9:07 AM
    Moving Stats - keep it up!
    • #5
    • 4th Jun 08, 9:07 AM
    Thanks Martin for your blog pointing out the CF disease, it's frequency and ramifications. I'm now 52 and a day does not go by when I don't think about my sister and brother who died from CF. My brother was the last - coughing himself to death 16 years ago when he was 28 while waiting for a heart & lung transplant in the Brompton Hospital.
    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.
    • Cheap Date
    • By Cheap Date 4th Jun 08, 9:57 PM
    • 210 Posts
    • 734 Thanks
    Cheap Date
    • #6
    • 4th Jun 08, 9:57 PM
    • #6
    • 4th Jun 08, 9:57 PM
    Thanks Martin for trying to raise awareness of CF. My 8 year old son has CF, spends a huge amount of time taking meds, doing physio, nebulisers, etc. He has a 14 day course of IV antibiotics every 3 months and doesn't moan (too much!!)

    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!
  • jennybridger
    • #7
    • 5th Jun 08, 7:36 AM
    • #7
    • 5th Jun 08, 7:36 AM
    if only you and MSE were around 30 - 50 years ago - my grandparents would have been very grateful i'm sure! sadly my twin aunt and uncle (who i never met) didn't have the benefits of modern drugs and science. and it is something i know i am very aware of my genes and my future regarding possible children of my own.

    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 . diabetes needs daily meds and monitor equipment and thats exempt (step dad is) - so why is CF any different??!!
    Last edited by jennybridger; 05-06-2008 at 7:37 AM. Reason: added email notification
    Reduce, Reuse, Recycle!
    Rejuvenate, Reinvent.......
  • Pamanham
    • #8
    • 5th Jun 08, 8:46 AM
    • #8
    • 5th Jun 08, 8:46 AM
    It's great that awareness is being raised and a HUGE thankyou to Martin. I really wish that CF was up there with Cancer research. I ran for 'Race For Life' and wished that I could do something similar for CF. My parents are constantly raising money as my brother has CF. He will be 33 next month. He copes fantastically well considering what he has to go through and never complains. He's only had one major stay in hospital and every few months when he gets really poorly he has IV's to fight the infection. He's a real inspiration to me and I hope Gordon Brown who is my MP and Prime Minister, seriously looks into all the issues mentioned above.
  • poppiedop
    • #9
    • 7th Jun 08, 4:22 PM
    • #9
    • 7th Jun 08, 4:22 PM
    Hi, I've never posted before (too shy!) but reading about the CF on here has just made me register.
    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
    • Let_Robinson_Sing
    • By Let_Robinson_Sing 7th Jun 08, 6:04 PM
    • 1,572 Posts
    • 2,508 Thanks
    Let_Robinson_Sing
    Hi, I've never posted before (too shy!) but reading about the CF on here has just made me register.
    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
    Originally posted by poppiedop
    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 Ł20 per vial 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
    • phebe3
    • By phebe3 8th Jun 08, 3:34 PM
    • 234 Posts
    • 42 Thanks
    phebe3
    I agree with all the posts up here...it is an orphan charity...not as big as cancer etc. Two friends I was in a class at school with, both of them q close friends, have gone on to have children with CF so I do know about it. I't's hard work and having to fork out for stuff adds insult to injury i think. My daughter has asthma and is running perilously near to the time she will have to pay for medication too...without it she could die so it's not like medication is a luxury. How can pple have breast reduction, help in getting off smoking etc totally funded by NHS and yet pple who NEED drugs to stop them DYING have to pay. In addtion these pple are not nessesarlu high earners because of their condition. Something is wrong in this country prioriy wise it seems at times.......
    • foreign correspondent
    • By foreign correspondent 8th Jun 08, 6:01 PM
    • 9,028 Posts
    • 19,091 Thanks
    foreign correspondent
    There seems to be no fairness in the free prescriptions system.

    You get free prescriptions for diabetes and thyroid conditions, but not for other conditions such as Cystic Fibrosis, Multiple Sclerosis or Rheumatoid Arthritis...

    ...and before I hear a cry of, 'well thats only arthritis!' - I have worked with teenagers unable to function and awaiting hip replacements due to juvenile RA, and others working very hard and worrying about how they will cope with the prescription fees when they turn 18 - it really is a very unpleasant condition and quite different to the arthritis that many older people suffer.

    I can see no sensible dividing line between the prescriptions paid conditions and the others... does anyone know?
  • EFW
    fund raising
    My husband has a website www.countrysidephotography.org.uk on which he sells photographs etc. All profits are going to Cystic Fibrosis in memory of our daughter-in-law's brother who died last year aged 22.
    • foreign correspondent
    • By foreign correspondent 9th Jun 08, 10:02 PM
    • 9,028 Posts
    • 19,091 Thanks
    foreign correspondent
    My husband has a website www.countrysidephotography.org.uk on which he sells photographs etc. All profits are going to Cystic Fibrosis in memory of our daughter-in-law's brother who died last year aged 22.
    Originally posted by EFW
    what stunning photographs - they are wonderful, thanks
  • jennybridger
    http://forums.moneysavingexpert.com/showthread.html?p=11623539&posted=1#post11623539

    something that could be done by MSE to help?
    Reduce, Reuse, Recycle!
    Rejuvenate, Reinvent.......
  • coops206
    I have a 4 year old daughter who has CF. She was diagnosed at 5 months old after fighting with the hospital to find out what was wrong with her, as the weight was constantly falling off her to the point where she dropped off the plot on her weight chart. Thankfully with the treatment she receives she has turned around and is, to all intents and purposes, a normal healthy 4 year old. But it has been a constant battle with prejudices from the 'leper' effect to financial strains. my only hope is she is not like the saying 'The candle that burns twice as bright burns half as long' because she brightens everyone who she meets and I would like to keep her that way

    Martin
  • scotpics
    I have CF and unusually it wasn't diagnosed until I was 40 years old. I'm now 50 and pretty well considering that since being diagnosed I've had bowel problems resulting in an colostomy then ileostomy and time on a breathing machine (which did wonders for my lungs - not!). The ileostomy gets me free prescriptions though so maybe I'm lucky. I've since broken my hip and had it replaced. I've now been diagnosed with pulmonary hypertension which is related to my CF but very rare. I'm not looking for sympathy here - life can be awful sometimes but it can also be pretty wonderful. The medical staff I've met and who have cared for me have been wonderful and are a credit to the NHS. I've also got a marvellous partner and family without whom I would not be here.

    It's great that Martin is publicising CF - it needs it.
  • lmstepney
    I'm the father of the two young children (my sons aged 3 and, 5) that Martin refers to in his blog. First of all I'd like to thank Martin and, the MSF (Lara -but don't tell anyone ) for supporting the Breathing Life Awards. They were great company and, Martin had lots of time for everyone. I was delighted when I saw Martin seated at my brother's (the guy he refers to as the big MoneySaver) table as, he is a massive fan. My brother wouldn't have been more pleased if JLo, Girls Aloud and, the Rolling Stones were all on the table instead! I was also delighted to meet Martin and, Lara.

    On a serious note. The Breathing Life Awards are a great way to educate people about CF. It's a shame they aren't broadcast on a more mainstream channel to a greater audience as, people are always so moved by them. The insight they give to the life of a CF sufferer is fantastic and, a real eye opener even for people who think they know a bit about the condition.

    Once again thanks for this work in increasing awareness of CF.
    There are several treatments for CF in the pipeline in the UK and, the US that have so much promise. If trials are successful they could transform the lives of people with CF and, their families. Life spans could be extended beyond our wildest dreams and, maybe enable sufferers to live a normal life without as much of the time consuming daily medications and, treatments. All that stands in the way is time and, a few million Ł's and, $'s.
    • HarrowITutor
    • By HarrowITutor 14th Jun 08, 10:07 AM
    • 4 Posts
    • 1 Thanks
    HarrowITutor
    I'd like to point out that it's not just people with CF who have to contend with this lunacy! People who have been diagnosed with a condition "for life" also have no entitlement to prescriptions for free. (Free? These people would love not needing to have to take medication!)

    My husband has a condition called Reflex Sympathetic Dystrophy (also known as Sudek's Atrophy or Complex Regional Pain Syndrome {CRPS}). In spite of him having been awarded DLA for the rest of his life and a medical conclusion that he will never be pain free, he still had to purchase pre-payment certificates until his 60th birthday.

    Basically, the conditions that DO entitle you to 'free' prescriptions are:-

    ·
    a permanent fistula (for example, caecostomy, colostomy, laryngostomy or ileostomy) requiring continuous surgical dressing or requiring an appliance – a form of hypoadrenalism (for example, Addison’s Disease) for which specific substitution therapy is essential ·diabetes insipidus and other forms of hypopituitarism
    ·diabetes mellitus, except where treatment is by diet alone
    ·hypoparathyroidism
    ·myasthenia gravis
    ·myxoedema (that is, hypothyroidism requiring thyroid hormone replacement)
    ·epilepsy requiring continuous anticonvulsive therapy
    ·you have a continuing physical disability which means you cannot go out without the help of another person.

    Since my husband, in spite of his condition, holds a full-time job in a local charitable organisation giving advice to people with disabilities, none of the above applied to him.

    The ruling on applicable conditions was made, many years ago, when certain conditions that we now know and recognise were unheard of. There has been no attempt to update the 'qualifying' conditions which is why people who, to all intents and purposes, should be entitled, aren't.

    As we all know, it's an unfair world!
  • jennybridger
    Would starting a petition bring it to the PM's attention again do you think?

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

    maybe - "To include Cystic Fibrosis on the medical exemption list for prescription charges" ?
    Reduce, Reuse, Recycle!
    Rejuvenate, Reinvent.......
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