'Cystic Fibrosis… moving stats' blog discussion

2

Replies

  • 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?
  • EFWEFW Forumite
    1 Post
    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.
  • EFW wrote: »
    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.

    what stunning photographs - they are wonderful, thanks
  • Reduce, Reuse, Recycle!
    Rejuvenate, Reinvent.......
  • coops206coops206 Forumite
    6 Posts
    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
  • scotpicsscotpics Forumite
    8 Posts
    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.
  • 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. :T
    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 £'s and, $'s.
  • 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!
  • 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.......
  • 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" ?

    I'm sure he's aware of it, his youngest has got Cystic Fibrosis so he's under pressure to remove the charges.

    there already is a petition doing the rounds
    http://petitions.pm.gov.uk/cystic/
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