No funding available

Morning all hope your as well as you can be. I went to see the respiratory consultant last Monday felt so sad afterwards. Back in March he referred me to see a thoracic surgeon re lung volume reduction unfortunately when I saw him in April he told me the disease was to widespread to do the surgery, he said the only other option was lung transplant which I didn't even want to think about so immediately said no, he then went on to say it could be worth trying either the valves or coils but would need referring to Cardiff which is 15 mins up the motorway from where I live. Last week saw my respiratory consultant who informed me there wasn't any funds available to referre me I was so devastated something that could possibly help me and is available 15 mins up the road. No wonder people look towards Dignitas I just feel so down if I had the energy I would be taking a trip sorry everyone for being such a miserable sod. I know I will get over it in time.

22 Replies

  • Hi Meglou, I'm sorry you have been let down so badly.

    Concerning the funding issue, is it a postcode sort of situation, because it is the first time I've heard of this.

    Many on here have at least had the tests to see if these procedures are an option and a few have had it done. You would think they could at least afford to test if your suitable.

    I know you said you moved away from your family, so have you thought of moving back at all? At least you'd have more support and funding might not be an issue where they are.

    I can understand you being upset about this. I can't think of anything else to suggest, but, I wouldn't give up on the word of one consultant Megalou.

    I hope someone can come up with a better suggestion than mine. xx

  • Your spot on with what you say the respiratory consultant actually said if I was living in England I would be refered. I could never move back and even if I wanted to I just don't have the energy for it.

  • Hi Meglou you be as miserable a sod as you want to love - you have earned it. It is good to vent isn't it? It sounds like they don't do the valves or coils on the NHS (yet?). Why dismiss a lung transplant out of hand? Why don't you look into it and have a think about it. It is not suitable for everyone but it might be for you.

    I hope you are feeling a little bit better now. Hugs xx

  • Thanks for being so generous about me being so miserable this procedure is available on the NHS and feel so let down I've paid my contributions since leaving school at the age of 15 and am still doing so. So it does bother me that the one time I need health care its not available and yet it's there just up the road imnot asking to be refered to another country its not guaranteed to work but if it does could make things so much more bearable for me.

  • Hi can't you have the tests to see if you are suitable? If you are then you could come temporarily back to the UK. Surely this would be worth it as it is your life we are talking about. x

  • Bless you cough I've already thought about it even just registering as living at my mums but that would mean I have no gp or consultant here should I get ill which unfortunately I have chest infections on a regular basis I only seem to manage four or five weeks before something gets me ha ha I often think living in a bubble could be a good thing but I've got to say seriously I am afraid of winter arriving but I'm sure I'm not the only one I experienced my first bout of pneumonia last year and it has left my right lung in a bit of a mess on top of the copd X

  • I'm sorry your feeling so down I know only to well how that dark cloud descends. I contacted Royal Brompton in London myself, they agreed to see me and just ask my G.P to refer me. I saw a Dr Shah he was lovely, it was for lung coils. Unfortunately I'm not suitable so lung transplant is my only option.

    Good luck

    Kim xxx

  • Well it would be nice to know if I'm even a candidate to have it done the respiratory consultant was talking about fissures in the lungs I'm assuming this would make it a procedure that can't be done if you have these he did say my right lung had a problem but he couldn't tell looking at the left lung to be honest I don't really understand all I know is there could possibly be a procedure that could help me.

  • so sorry for you,i had L V R in April in ST JAMES leeds when i went to clinic last week they said they do coils there. its not fair take care x

  • Hope you don't mind me asking did it help you having the lvr .

  • Well done, Jean. Glad it all worked out for you. x

  • I've actually been in touch with spire private hospital in Cardiff they have said it would cost between 30/40 thousand I would pay that in a flash if it was guaranteed to work but that's a huge amount of money out of my life savings and God only knows how long I am going to live and think I will possibly need all my savings to pay for any help im likely to need later on.

  • I would ring the BLF helpline to see if they could find a solution.....also contact your MP and give him all the details.

    Thinking of you, take care

  • It's only a thought but why don't you contact your MP. Mine has been very good to me. They can ask the searching questions that we feel incomfortable with and they also know where to ask them. A letter from the MP may make those who have made a blank statement of no funding think again. Good luck and do keep moaning. It's the only way that we can often get the help we need. xx

  • Hi

    I live close to Cardiff and my consultant is based in Llandough hospital but she sent me to Harefield transplant unit to be assessed for transplant and ive never had funding mentioned to me ...i would query it if i were you.

  • That is terrible meglou and I feel so sad for you. It is like giving you hope and then snatching it back again. Dreadful way to treat people and there should be funding available for a life saving operation. xx

  • Hi everyone thanks to you all for your replies I have been in touch with British lung foundation they told me different areas have different criteria I have e mailed chief executive at the princess of Wales did that last Tuesday waiting for a reply will chase that one up tomorrow I've e mailed carwyn Jones and I've just put a letter that will be sent as e mail to local councillor. Yeh if I said yes to a transplant I would be refered to London but I don't want that X

  • thanks toci,hope things went well for you.To meglou i feel a lot better but it was tuff they said i am doing well,takes up to a year to get better soon be dancing around ha xx

  • Thanks Jean there was no problem referring me to Swansea for LVR done the old way I was just unfortunate for the disease to be too widespread. I wish you all the best in your recovery and hope your soon on the dance floor.X

  • thanks for that meglou.x

  • I too was refused lvr as disease is too widespread,then i was refused the coils /valves as there is problems with my tubes where the valves would go,then i was refused transplant list due to numerous other complications. Through all this I was never told funding would be an issue , you must be so angry knowing that something can be done for you yet lack of funding is stopping any treatments.

    I wish you all the best for the future and I hope that some help becomes available for you.

  • Thank you for your kind wishes I think your talking about the fissures that's what would stop me having the valves or coils the respiratory consultant did mention that when I saw him im really sorry to hear about your predicament though and wish you well. I guess we have to deal with what we are served up in life but what I've found is the battle to get any help gets weary but we keep plodding on. I just feel like I've been wrote off at the age of 52. X

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