Carole's Story -- by Sandra Laing:
Carole was 48 when she was admitted to the Carseview Learning Disabilities Assessment Unit, part of Ninewells Hospital in Dundee, Scotland. Carole had suffered mental health problems since the age of 10 and had been on medication since then, she had also been a patient in Carseview on numerous occasions.
Her illness sadly, was not curable.
I visited Carole often along with my partner and I cannot count the number of times I pointed out things that were worrying me about Carole. She went a strange colour, her skin was pale and waxy looking, she kept having breathing problems, her speech was barely audible, she had muscle pain, dizziness and falling over, unexplained bleeding, feeling cold all the time.
These were symptoms that I reported to ward staff and her doctor over a period of months. I was continually told that Carole was fine and that they were treating her. I was told that she had fluid on the lungs, she was drinking too much, was not eating, was constipated, her mental health was failing again, she had various "minor" infections that were being treated etc., etc. everything but sepsis.
Even after I begged staff on the ward and her doctor to seek medical help, I was laughed at. Her doctor, who of course was not a medical doctor, but a psychiatrist, even asked where I got my medical degree from. No one would listen and no one would help. I knew my sister and loved her deeply, she had been one of my best friends our whole lives. I knew that something more serious was wrong. I was on my own. We only had each other left.
All I got from medical staff were insults, not one of them would listen to anything I had to say. They knew better. They had been trained.
I called Carseview one day to enquire about Carole and was told that she had been taken to The Intensive Care Unit in Ninewells itself. Again I was told it was because she was constipated. I called them immediately. Her new doctor told me he suspected that she had something called pancytopenia. This is when the bone marrow fails. You can no longer make red blood cells, white blood cells or platelets. Your immune system gets destroyed.
At his request I went to speak to him about what had been "going on" with Carole. Finally I thought, someone who understands that I may have something to say that might help.
I explained that I felt they were to quick to give Carole medication. Every time something changed about her. The symptoms she had been having. All were treated with drugs, without any further investigations. Carole already had stage 3 liver and kidney disease. Why would you be so quick to add even more drugs to her regime? It was preposterous, but, apparently I was wrong. Her new doctor said that he had taken her off of all the medication she had been on except the ones he considered vital. I agreed with him.
Carole seemed to pick up a little, but her bone marrow was still failing. The antibiotics were not working.
A few days later I got a call from a nurse telling me that Carole had passed away at one o'clock that afternoon. I was stunned. Her autopsy report said that she had contracted sepsis via an infected venous catheter. This is what was put down as cause of death.
I believe that numerous opportunities were missed. I begged several times for a medical doctor to examine my sister. Why did she keep getting all of these other things? Why are they not looking for an underlying cause? These are questions I had been asking while Carole was alive, and I still do not have the answers. Several complaints to NHS Tayside and one to the General Medical Council. What a waste of time. I was told that this was acceptable, not one single reprimand was issued. All I got was a grudging sorry for your loss.
I now believe that Carole was showing signs of sepsis for a while and it was kept at bay by the various bouts of treatment. I believe that if further investigation was done she may still be here today. Carole was displaying most of the symptoms of sepsis and I know that if I had been aware of it I would have shouted from the rooftops until she got help, but I wasn't aware. I honestly just wasn't really expecting her to die.
This is wrong. Everyone should know what this is and what the sypmtoms are. Especially anyone in a care giving role. By the time it was diagnosed it was already too late to do anything about it. I only heard about it after her death. Even then it was never really explained to me. I had to learn about it myself.
The symptoms of sepsis include:-
Getting out of breath
Don't let it be too late for you. Know the symptoms and if you suspect it say it. It could save your life or the life of someone you care about. The symptoms above are just some of them. There are more. Please learn what they are. Carole was just 51 when she died. Not a day goes by without the thought coming to my head that, "if only I had known then what I know now".
I believe that if the symptoms had been looked at as maybe being related the outcome would have been different. Caroles symptoms were all teated individually. Nothing else was considered until she was taken to ICU. Even then the diagnosis was too late.
Everyone needs to learn from these mistakes.