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Moved home and no support for IPF

Posted , 4 users are following.

janet07941
janet07941

Hi, Moved to Kent from Norwich 6 months ago and no one seems to consider my illnesses serious, my breathing feels bad and been coughing a lot. out of breath all the time now so resting too much rather than doing stuff. I am 75 in February and registered disabled with other illnesses, and use a mobility scooter. I was diagnosed last year and seem to have got worse lately. Norwich had a good support group but there is nothing here to my knowledge, after a bad attack when I was wheezing and gasping for breath, it took all day to get medical attention, by then I was breathing OK but over breathing to compensate. Eventually saw a practise nurse who said call and ambulance if it happens again. I am investing in a Buzzer (medical allert) in case. I feel very unsuported at the moment as my family are a hour or more away, but still closer than before I moved. I wonder if all my medical records were transfered from the last surgery. 

2 likes, 6 replies

6 Replies

  • jazztrain
    jazztrain janet07941

    Posted

    Hi janet07941

    Have you registered with a GP in Norwich? as it is he or she that needs to refer you to a Thoracic Chest Consultant presumably to The Norfolk & Norwich University Hospital!

    I take Pirfenidone capsules on a daily basis and these do help to keep my IPF at bay. See your GP - they should be able to sort it out.

    Jazztrain

  • jazztrain
    jazztrain janet07941

    Posted

    Hi Janet07941

    Okay, well the same reply is still true but in reverse? You need to see your new GP who should, I repeat should refer you to a Consultant in the Thoracic Chest Department at your main hospital. I have to travel some 70 miles to Papworth Hospital to see one BUT she is very good and has helped me a lot.

    Kind regards

    Jazztrain

    • janet07941
      janet07941 jazztrain

      Posted

      Thanks, I will. I have to go to Canterbury hospital regularly so may be able to fit appointments in one day and get it all done together. xx
  • john15065
    john15065 janet07941

    Posted

    HI Janet.

    Jazztrain is right. You must contact a GP and be proactive about getting help which

    will be available.

    I take tablets called Nintedanib which have slowed down the progression of the IPF.and have to travel to London for regular check ups at either the Royal Brompton or The Harefield hospitals.

    Both are so supportive, caring and helpful.

    Good luck and keep that chin up!!

    Best wishes 

    • janet07941
      janet07941 john15065

      Posted

      Thanks John, its just that the GP's dont seem to take it seriously, one even said you havent got that much wrong with you....I'v been on mild chemo for 26 years for prolificative syndrome which is now turning to meylofibrosis. OK I know we dont live for ever, but I dont want to go before I have to! xx
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