why are we left all most alone to deal with copd

being told my husband was at the end of the severe stage and at the begining of the end stage by the GP and then left alone with an occassional visit from the community nurse

my husband has just had pnemonia been sent home from hospital and again just left to me to deal with it

Is this normal? What can i do? he has NO consultant I am struggling with his care as i have mild MS

12 Replies

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  • I cannot believe what I am reading, mojo50. You need help and support. First step is to ring BLF0300000305555. Consult your GP. No cooperation from him --ring PALS (dont have the no. for your area) Approach the Social Services - they can advise.

    All the very best - coming into this group - plenty of friendly advice - Love Annie80x

  • Thank you annie

  • Your husband should have not been allowed to leave hospital without a care package from Social Services thats disgusting x

  • PALS (Patient Advice and Liaison Service ) - Call 01707 369699 or 01707 369704 for your area.

    Call Hertfordshire County Council, Health and Community Services - 0300 123 4042

    Hope that helps. :)

  • thank you so much Gordon

  • I will be thinking about you, mojo50. love annie

  • I really cant understand why you have been left to deal with this on your own,hope you get the help you need take care

  • Shoo the GP and talk BLF they,re brill and this mottley crew you,ll not go far wrong with them, if you dont die laghing at some of the blogs first wish you both well.

    "H"

  • Hi

    Please call us at the Helpline - 03000 030 555 - as Annie says. We can arrange for you to speak to one of the nurses - they will explain to you what you need to try and get put in place to support you and your husband. Then it will make any other calls that you might need to make a little easier?

    Thanks

    Mark

  • Thank you Mark , i have sent an email as not to good talking i get to emotional and also dont want husband to hear i am talking about him

  • Hi

    Muriel is going to reply - but what lung condition does your husband have?

    Thanks

    Mark

  • Hello, I read your blog with sadness and so know how isolating this illness is. My husband was told he was severe and that was that! He became very ill and I have never been so scared and felt so alone. I have found that you have to ask for help. Eventually after a particularly horrid episode two years ago my sister found that there was a specialist respiratory team in our area. I rang the Doctors and was told "yes there is" - keeping my cool I asked if my husband could be referred. Amazing! It was as easy as that after 8 years of no support! I wonder if there is the same service in your area?

    They did not have a magic wand but did help with all his meds advise on his sats, what to do if he was having an exacerbation.

    I can only say personally that you need to ask for help. The BLF helpline is fantastic so please contact them. There is also local breath easy groups - my husband was encouraged to join and has enjoyed visiting the meetings which are just once a month but again alleviate the isolation.

    Try not to be frightened and isolated - there is support out there, its just finding it! Take good care of yourself.

    With love and best wishes TAD xxx

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