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  • #15056

    LorenzoJ1868
    Participant

    Hi all, my Father aged 82 who lives on his own  was diagnosed with cholangiocarcinoma cancer 3 weeks ago. He has not been ill only severe jaundice. He was admitted into hospital after the 3rd time seeing his GP. Routine test done, no stents no chemo discharged last Friday with palliative nurse to tell him it is terminal and no further treatment would help. To he honest only the district nurse has popped in to see him, family helping as much as possible. Is this normal to he neglected and no further medical professional to see him on a daily basis? Not sure which way to turn. He is so poorly. Palliative nurse said he has 3/4 weeks to live, he doesn’t know this. Your support would be appreciated. Louise

    #15060

    Helen_ammf
    Moderator

    Dear Louise

    We are all so sorry to learn from your post that your father has been diagnosed with cholangiocarcinoma and, it seems, has been left with so little support, medical or otherwise.

    Usually, when a patient is given a terminal diagnosis, it should open up various avenues of care packages, etc.  Can you contact your father’s GP as a matter of urgency to see what plans his doctor has for his continuing care – this would certainly be a good first step. The surgery should be able to advise about social services care packages that could be activated now.   If your father has any symptoms from his jaundice that are causing him problems, then again ask the GP about this, as these should certainly be addressed.  (Please remember just to check with your father that he is happy for you to speak to his doctor on his behalf.)

    You might also find it useful to contact organisations such as Marie Curie, or Macmillan for further general advice.  Direct links can be found on AMMF website on the helpful links page:  https://ammf.org.uk/helpful-links/  

    I hope some of the above is helpful for you …

    With kindest regards

    Helen

    Please note it is not appropriate for AMMF to give medical advice or recommendations, and all details provided are for information purposes only.

     

    #15114

    lucymcneil
    Participant

    My 67 year old father was diagnosed on 27th August this year, and died on 27th September, at home, with no painkillers or syringe driver.

    In the week leading up to his death  the family felt extremely helpless. Hygiene was a real issue, and despite numerous phone calls we were passed pillar to post and received no help with his care. He was unable to get out of bed, and we were unable to change his bedding. We we’re literally begging for help but with none forthcoming. We were told that kind of help doesn’t come until your close to the end. But he clearly was close to the end.

    I ended up getting return phone calls about the requests for care help a week after he had died.

    The district nurses who visited, were visiting blind, and were not aware of background or prognosis. The pallative cate nurse was helpful when she finally visited(a week after referral).

    It seemed all the different agencies weren’t communicating with each other, and were palming off responsibility to the other agency. It took 4 weeks from requesting it initially to be given a DS1500 form (finally got it 2 days before death). Repeatedly asked every person we encountered for it.

    seems if you choose to die at home you are left to it.

    #15120

    LorenzoJ1868
    Participant

    Dear Lucy and Helen,

    My poor lovely Dad passed away peacefully at home surrounded by his family.  To be frank, I agree with you Lucy, it was appalling that my Dad was discharged from hospital with no support put in action.  I tried to contact cancer organisations but was told there would be a waiting list of three weeks, we had only days left.  So the bottom line is if you are over the age of 60 no help is given to the patient nor family and that you are left to your own devices. Without my wonderful family my Dad would have passed away scared and alone at the age of 82.  Unfortunately I feel some parties played a very poor part in helping my Dad’s final days more comfortable.  I’ve said my piece and pray no one ever goes through the stress and desperation that we all felt as a family.

    Kind regards

    Louise

    #15130

    Julie_ammf
    Moderator

    Dear Louise

    We are very sorry to hear that your Dad has passed away and that your experiences with the services you contacted was so difficult.

    Please accept the condolences from everyone at AMMF and know that we will keep working for all those precious people we have lost too soon, until the answers are found.

    With kindest regards

    Julie

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