Misdiagnosis or unlucky then lucky !

Hi All, not sure what im looking for while writing this, but maybe some answers of help or justice or something !

My older sister hurt her back in Decemeber 2014, it became so painful she ended up bedbound for weeks with her doctor prescribing her antibiotics... and paracetamol stating she may of pulled a muscle or it could be ...something else. She could not walk and ended up in hospital mid January and diagnosed straight away with a UTI. They treat her for this and took blood test and a CT Scan, which revealed she had cancer.... then they sent her home... and that was i, literally. extensive metestatis or however it is spelt.t ! No mention of further tests, what it could be etc. They wrote a letter and made an appointment for a CTscan to delve further 2 weeks after discharge, but she never recieved this letter as mid February she "Crashed" an ended up back in hospital where she needed 4 pints of blood. At that point her husband was summoned into a room and was told she had days... yes days to live and if he wanted they could get her stable enough so that he could take her home to die. She is 43 years of age. He had to break this news to her mother, father, son and sisters.

Provisions were made and a bed was taken immediately to her home omplete with oxygen and medication. Macmillan nurses and district nurses. She had a driver attached for consant morphine so on and so forth. Moving on to a week later... a senior macmillan nurse requested a second opinon from the hosptal stating the she was on the up rather than the down and this was not the ususal pattern.for someone who had been told by 5 consltants that she had days to live. A diffrent consultant came to her home and examined her and immediately began to ensure tests (yes proper tests) at this point were carried out. After biopsies, scan and blood tests and information of where the cancer was... liver, bones, breasts, diaghpram, lmpyh nodes, basically all over her body, all secondaries, they could not find the primary,

After lots of tests they finally told her the news on Monday. The primary is Melanoma which has spread to her organs, however, they believe it is all treatable. Absolutely fantastic news and we are totally over the moon..... now the anger sets in. How can 5 consultants sit her husband down and tell him to take his wife home to die without performing these tests... it took a macmillan nurse to see that something was not right. She has had this to fight and she has done an amazing job with no treatment for five months and the fear of all of this hanging over her and wondering why no one wanted to help her in the first place. The Macmillan nurses are amazing and are not recognised enough. Had my sister been someone who may not of wanted to fight, this could of been such a different story. How can these consultants get away with this !! It is not right. She has previously hd moles removed and melonoma found in both oer 6 years ago was the last one, why did they not explore this avenue first !!! before they discharged her the first time knowing they had found cancer !!

  • Hi MRSL.

    This sounds like your sister has been around a rollercoaster.

    Im glad to hear its much better situation than it was first thought.

    I am no doctor, but I assume your sister had all the signs that pointed to a certain outcome, and the doctors concluded what the outcome would be.

    I suggest you all focus on your sisters treatment and recovery, and try to find out what happened with the five consultants later on.

    Good luck to you and your sister.

  • Hi MRSL,

    I can easily understand your anger, on the face of it this appears to be a monumental *** up.

    In the short term I agree with Space_1999 and suggest you all concentrate on the positive outcome and enjoy your sister's second chance.

    Medium term, at the very least I suggest you write to the Trust's Chief Executive (copied to their Medical Director and Board Chairman), tell them the story as you have written it above, plus relevant dates, and formally ask for an explanation of what happened and why no-one checked your sister's medical history which would have revealed she had a history of melanoma. 

    The minimum you deserve seems to be a letter of apology, an explanation and and a detailed description of what changes are planned to reduce the risk of this situation happening again with another family.

     

    Best Wishes
    Dave
     

  • Let me join hands with you all wishing your sister a good outcome. These things happen so easily = and no one can be perfect in such an imperfect World - I wish it was. I personally would concentrate on the treatment and positive feelings. We also felt angry that the diagnosis was slow - but anger is such a destructive emotion and such a dangerous emotion = we quickly moved on our feelings by considering how it would be from the other side. How difficult it would be to give an accurate diagnosis when under pressure and stress. This transformed our feelings to positive and we got through the treatment well. Not even my garage can diagnose my car's problems 100%!

    Good luck and best wishes

    Steven

  • Hi Steven,

    I agree with your sentiment especially about anger not having a place but, as a manager, this smacks of a failure of process rather than failure of any individual clinician. The sooner this is investigated and any identified issues corrected the better, otherwise someone else could easily suffer from the same error under similar circumstances. 

    Hindsight is always a wonderful thing but if the individual making the diagnosis was unaware of the full history of the patient the chances of that doctor getting the diagnosis correct are reduced. The error would be compounded should doctors subsequently treating the patient also be unaware of the full history.

     

     

    Best wishes
    Dave