Sick of chasing my hospital

Nearly three months ago I started chasing my RA specialist re ongoing problems and my latest Ct scan which has shown my RA lung disease has progressed quite a bit. In the age of email , phones and faxes I cannot understand how and why I am still chasing my RA team for news / treatment. I have been off TNF's since November due to my knee replacement in February and between my lung specialist and RA specialist I am getting nowhere and really struggling. The help line can't help, the secretary has given up returning my calls my GP says speak to RA specialist . I have made one final call today before a stinking complaint. Rant over

12 Replies

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  • Hi, can understand your need to rant. Have you thought of contacting PALS. They are a group of people in each hospital who will hear your complaint without prejudice & will try & get a resolution to problem. It might help

  • Hi dmc12,

    As aligator has said, it is worth contacting PALS. I'm not sure whereabouts you are in the country so I have put a link here for you so that you can search for your local office:

    nhs.uk/Service-Search/Patie...

    PALS covers England only, however there are different organisations for Scotland, Wales and N I. Do come back to me if you are not in England.

    Also bear in mind that you can ask your GP to refer you to another rheumatolgist / rheumatology department if you feel you are not getting the care you should be from your current team.

    Good luck and I do hope it gets resolved soon.

    Regards

    Sally

  • hi sally, i am struggling with my RD department, and was interested in your comment that you can ask your gp to refer you to another dept. before i ask, can i ask how strong this information this is? is it in a patient care code? anything that will help me back up my case for another referral would be really helpful. thank you.

  • Hi dillie,

    I have put a link here from NHS choices about getting second opinion:

    nhs.uk/chq/Pages/910.aspx?C...

    Hope that helps,

    Best wishes

    Sally

  • thanks sally - that is really helpful! dillie

  • I've had communication problems too. Rheumy told me when I asked her about it that I should get GP to ring the duty registrar and that any urgent message would get through. This doesnt sound very satisfactory but we have linked up in the past!

  • hello there, you deserve a good rant going through all that red tape, really frustrating isn't it? i have to say though my team are brilliant in every way, i suppose i'm the exception.

    what i wanted to ask you is about your mention of lung disease related to Rheumatiod Disease. back before i started on bio's i had all sorts of teast done to make sure that i would tolerat them and that i had no underlying diseases. i was told then that i had a 'thing' on my 'heart' lung. they gave it a name....broncial something. i did ask them to repeat it again but i forgot it again. they told me it could be related to the fact that i used to smoke and that i didn't have to worry about it...... so i didn't.

    moving on nearly two years i'm finding i have a shortness of breath at time. mostly if i am bending over trying to do a bit of weeding or washing the floors or even walking and talking at the one time!! it may be nothing but it is very noticiable. i was in the park the other day walking my dogs and i had to take a fone call......i started loosing my breath while talking and had to stop walking and talking until i got my breath back......that has happened a few times.....i had to hire a fella to come in to look after my garden for me as i simply can't do it anymore.....for the obvious reason of course that i have Rheumatiod Disease and now this.

    i amy be making something out of nothing but you were the first one this site that i have heard mention problems with your lungs that are related to RD.

    i had an appointment with my Rheumey just last week but didn't mention it as i had other problems with mediciation that are giving me problems. to be honest i think i may be making more out of it than it deserves. maybe i should go back to my GP first and get him to look into it for me.

    you know i was healthy as a horse before i was diagnoised with RD.......seems now like i'm never out of the rheumy ward or my GP's office. i was never sick and had a very active social life. all that came to a sudden end when this disease just ran through me in the space of about 9 months!

    anyhow, sorry for going on so much, now i'm ranting. today here in ireland the weather is beautiful and i'm going to take my beloved dogs to the park for a walk.....i'll try not to talk while i'm doing that!!!!!! all the best and i hope you have better luck getting through to your Rheumy.

  • Hi, I was 1st diagnosed with Rheumatoid lung disease after being hospitalised due to a persistent cough that was so bad I was vomiting daily. They did a CT scan and discovered I had a nodule on my lung and some fluid after a biopsy to rule out cancer it was determined I had rheumatoid lung disease. In the last year this has got a lot worse and I am constantly out of breath although my lung function tests and oxygen levels are always normal. They only way they knew of this at the start was my cough and now the mutliplying nodules. My GP has been fantastic and referred me to a great lung specialist and hopefully I will be starting treatment soon. I would definately mention it even if only to put your mind at rest.. Good luck Donna

  • poor you.....i'm not anything at all like that. i had heard the RD can effect the lungs.....it's probably just my head.....but i will take your advice and mention it to my rheumy when i see him again in August.

    i wish you all the very best Donna. take care and thanks for responding. CC

  • I am also interested in how RA has affected your lungs. I had pneumonia last December after starting Methatrexate and once again have it after adding Enbrel with only 2 injections. After this round of antibiotics I will be having CT scan.hope you get your situation resolved soon. I am here in U.S. And health care is same- extremely frustrating !

  • My lung disease is nodules and fluid on my lungs, shortness of breath and persistant coughing . This started after I had enbrel and some sites say this could be related although I do not know and have not had any advice or evidence of this. I think now I have a weakness in my lungs it makes me more prone to chest infections and I have had a chest infection for the last 7 weeks but again I am not sure if this is the case or just a coincidence. I hope you get some good results. Best wishes Donna

  • Thanks for sharing your experience- I hope you get your situation resolved- it seems like every time I think I can start biologics something comes up!

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