Do I take action?

I was admitted to hospital to be put on apo morphene pump and stop pergolide..They decided not to give me the pump but still took me of the pergolide and sent me home.My condition got very bad.Went back to hospital and was told I had been put on ====but cant remember nameof drug luclkly I was able to prove her wrong and from that day I have no end of problems.Have been in hospital again and found out my chest xray was perfect. no need to come of pergolide then.Do I take legal action or just let it go?Obiously this is a very short detail.

16 Replies

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  • You are faced with a very hard decision. The hospital was wrong, you can prove it, they should be held accountable. Problem is, the hospital is a very powerful beast and there is the possibility they will crush you. If you decide that you have to pursue this and do what you feel is right be sure that you have plenty of support behind you. Have been there and I swear I would never go there again...Good Luck!

  • Are u in the .Uk or USA

    Makes a difference

    Lol,jill

    :-)

  • Thank you for your answers.I Iive in the U.K.. What I wrote this morning is only a small segment of what has happened to me.I want to complain about the consultant and nurse but I don't want any financial gain from it.

  • Get some advice this should not go unoticed, if in doubt I tend to go first to citizens advise bur they are free and will point you in the right direction xxx

  • that is bureau sorry cannot spell xxx

  • THESE ANSWERS PEOPLE ARE GIVING, ARE NOT GONNA HELP YOU

    THIS IS THE REAL DEAL

    PERGOLIDE HAS A BAD IT SIDE EFFECT CALLED ERGOT RING, THIS DRUG HAS BEEN REPLACED BY A MORE MODERN AGONIST, ( SOME TIME AGO),,THEY DID NOTHING WRONG, EXCEPT LET YOU USE THIS, SO LONG,

    DID YU NOT ASK WHY YU WERE BEING TAKEN OFF PERGOLIDE,COMING OFF THIS AINT EASY, AND YU THINK

    YOU MUST HAVE IT,(LIKE COLD TURKEY) BUT THE ( LIKELY)REPLACEMENT( ROPINEROLE) TAKES A FEW WEEKS TO KICK IN,, YOU WILL SOON FEEL BETTER,YOU M UST, START PAYING ATTENTION, TO WHATS WHAT

    THEY WOULD NOT HAVE STOPPED PERGOLIDE WITHOUT GIVING YOU AN ALTERNATIVE, THE PUMP WAS A NONO, YOU WERE PERHAPS DISSAPOINTED,OR PERHAPS,

    THE DOCTOR DID NOT EXPLAIN ,THE NEW PLAN, OR MAYBE ,YOU DID NOT GET WHAT WAS SAID,THE DOCTORS USE THEIR OWN TERMS, AND WORDS

    COMMUNICATE BETTER, START BY BEING ABLE TO SHOW THAT YOU KNOW, THE LATEST OPTIONS ABOUT YOUR CONDITION

    WHICH IS CLEAR, YOU DID NOT

    YOU, READ AS MUCH AS YOU CAN, THE TERMINOLOGY DOCTORS USE,IS THEATRICAL,LEARN IT, OR YOUR NO WHERE,

    BUT A COMPLAINT,, I THINK,YOU MUST RECONDSIDER, IN LIGHT OF MY ADVICE

    PROFESSOR

  • Hi I am well aware of the problems of pergolide and the symptoms of my condition.As I said above it was only a brief out line of what has gone on and to be honest I felt so rough yesterday I was having a moan and actually would never consider taking legal action.

  • All this is scarey to me because it's become difficult to advocate for myself & to fully comprehend whatever I can drag out of health care workers. It is annoying to them to repeat parts of what they've already said - so I can piece it all together, know what's happening, know my choices, exercise my choices, etc, One time I burst into tears & couldn't stop crying hard (for nearly 20 min.) when a nurse in an emergency room didn't respond to my explanation of my slow thinking. That was the moment that I realized in horror that I could never be alone when seeking medical help.

    My cousin or a friend take me to doctor appointments. They can speak for me, explain what the doctor says & advocate for me. I've used a patient advocate in hospital. She wasn't there when the doctor was present - so not much help. Usually patient advocates can't get to you in time for the moment you need to make quick decisions. Most hospitals have no patient advocates working nights.

    I'm frightened of what might happen when it's most crucial in an emergency if no one can be contacted quickly enough to let my wishes be known. I have documents ready for health surrogates for when I am actually incompetent to make decisions. Yet, even then, it will take time to reach them. I do have a Living Will - so at least my general life & death directives will be known.

    Anybody have other ideas on how people perfectly capable of understanding & making informed decisions, but incapable of doing so readily, can have the opportunity to understand their own medical condition and make informed choices about their own health care/medical treatment?

  • I have hired my own medical advocate, who will go to all appointments with me etc. She is an MSW who now does personal care. She's also finding her own funding. My best friend and my daughter are my second and third alternates as medical advocates. I have them all trained, and they each have a duplicate of my hospital bag with instructions regarding PD patients, and empty medication bottles, etc. in them. I keep a running list of questions and concerns before doctors appointments. I also tape-record my doctors appointments on my phone and on a digital tape recorder, and I ask Drs to write down all instructions. I also keep a journal of symptoms and any changes, and I email current copies of my important documents – list of meds, living will, etc. – to my children, a few friends and my medical advocate, and keep the originals in my medication box. Medical professionals are supposed to slow down and communicate with you at a manageable pace, and I insist that they do so. I have said to people, "I am just as intelligent as I was before; my processing is just slower, so I need more time to deal with this." It's their job to accommodate us. I am a teacher, and I know that anyone who is an expert in their field should be able to explain things such than a nine-year-old could understand it. Sometimes that's my level of understanding; I expect them to be able to explain things on that level, or find someone who can. Most of the things I would need to communicate are in writing in my purse and in the list of documents I mentioned. Nevertheless it is my intention that I will never ever going to a doctors office, hospital, surgery etc. without my medical advocate with me. I talked to my neurologist about this, and she said "I am a doctor, and still no one in my family will ever go to hospital without a medical advocate being with them 24 hours a day."

  • Also, get your Aware in Care Kit and ALWAYS take it to the hospital. It helps you make clear that some PD drugs cannot be stopped cold turkey.

  • RathclIne

    Have you considered discussing your concerns with your local PALS service staff?

    nhs.uk/chq/pages/1082.aspx?...

  • To be quite honest I am so upset about the whole situation and the changes it has made to my life that I don't know what to do.

  • I believe you should take action - get the word out as you did here. It must be like a nightmare for you. Reporting what happened to you could save others from experiencing similar treatment (in more than one way) especially those who have cognitive problems & need time to comprehend what's going on. Everyone (or their health surrogate) has the right to understand & have input into their treatment plan. You don't need to use a lawyer if you'd rather not; but you may help others by reporting what happened to hospital administrators, nursing supervisors, local groups, etc.

  • (in more ways than one) - Just wanted to get it right

  • Ring the Parkinson's UK help line.

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