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Not so much a discussion, as to say I filled in the questionaire on this site re warfarin.

Posted , 4 users are following.

bowman
bowman

I filled the questionnaire in, but how the questions are worded don't really give a good picture for those taking warfarin.

My husband was put on warfarin 2 years ago. He has NEVER seen a haematologist, and the GPs surgery only wanted to see him once every 10 weeks.

We have now purchased a coagucheck machine to do it ourselves at home, as his INR goes up and down like a yoyo.

We have tried talking to the Hospital that gave him the warfarin in the first place and have tried getting them to respond by going to the ombudsman...no help whatsoever.

He was mixed up with a patient with a similar surname and given that patients drugs to take home!...we have been trying ever since to find out if he should even be on warfarin.

He takes it because is frightened not to...but the side effects are horrendous.

0 likes, 14 replies

14 Replies

  • rob60599
    rob60599 bowman

    Posted

    Hi Bowman,

    I just read your posting and it sounds like you have a good case to sue your GP.

    After having two DVT's in the last seven years I like your husband am on warfarin as treatment, the only difference is that i'm on it for the forseeable future. I totally agree with what you said about side effects my INR has just stabilised at 2.9 after months and months of very low and then very high blood inr's.

    He really really needs to see a haemotologist they are the only people who can definatively identify whether your husband needs warfarin or not. I had to ask and ask my GP to be referred and they started out saying no I didnt need it and it was only after 3 months of asking did he actually refer me to a specialist who diagnosed that i had a blood protein problem. It must be very upsetting for you both at present but you must stick with it and get referred asap. I hope i have been a bit of help.

    regards Rob 

  • derek76
    derek76 bowman

    Posted

    I have never heard the like of that before and I know people who attend various surgeries for their checks. Even if you go abroad on holiday you are gived a clinic address for for the place you are going to to get it checked.

    Why was he put on Warfarin? Normally you attend the hospitals warfarin clinic until they are satisfied that you are on the correct dosage and then referred to your GP's Warfarin clinic. If it fluctates you must be seen weekly. The surgery gets around £12 a time for checking it. The one I go to has around 300 Warfarin patient and two nurses spend the most of two days a week checking patients. Some who are housebound are given machines and phone their results in at a set time.

    Does your coagucheck machine work out the next weeks dosage for you??  Does he have a yellow Warfarin booklet to record his readings in and carry around at all times n case of illness or accident?

    I had an instance where my INR went from 2.2 to 3.9 in the space of twelve days and alarm bells were ringing at the surgery to find the cause.

    Personally I would change my GP. Hospitals all have a complaints procedure.

    I have painfull joints since starting it. A neighbour has that and her hair fell out as well. Another Guy saysthat he aches all over. Many feel constantly cold.

    • bowman
      bowman derek76

      Posted

      Hi Derek76. The coagucheck only gives the INR, but we are manageing the dose ourselves with much better results than with the GPs clinic. His range should be 2-3, but as soon as it goes over 2.5 he gets dreadfull mood swings. His eyes often bleed and his hair has fallen out since starting on warfarin in 2012. We now pay to see a physio once a month because of the joint pains...mostly in his ankles and hands. his drug chart went missing for over 12 hours and the warfarin was apparentley started during this time. His yellow booklet has the other persons name on it...when I told the person who gave it to us it was snatched out of my hand and altered!!

      We are still fighting for answers from the hospital, as while he was in, for 8 days, we were mostly ignored.

    • derek76
      derek76 bowman

      Posted

      A physio won't help with the joint pains if they are drug induced. I went to the hospital physio and we agreed that it was a wate of time. In fact the exercises made it worse.

      My dosage sheet says if any unexplained bruising or bleeding contact A&E or your GP as a matter of urgency.

      Have you tried speaking to yjr NHS out of hours service?.

      When I had a problem with my local hospital and the consultant did not answer my two letters I contacted PALS. After thathe answered, we had a meeting he ate humble pie and made changes to the procedures I complained off and put effort into adding sessions to a procedure with a four month backlog.

      Every hospital web site will have a link to PALS.

      An extract from a site:

      "As a patient, relative or carer sometimes you may need to turn to someone for on-the-spot help, advice and support. This is where the Patient Advice and Liaison Service comes in.

      The Patient Advice and Liaison Service provides confidential, on-the-spot advice and support, helping you to sort out any concerns you may have about the care we provide, guiding you through the different advice and support".

      Of course you may need a lawyer.

  • lucy02639
    lucy02639 bowman

    Posted

    Hi Bowman,

    This is completely unacceptable and,sadly, only goes to show the difference in health care between regions - I'd be interested to know which area of the UK you live in. I started on Warfarin (for AF) about five weeks ago, and at first went to my anti-coag clinic at the hospital every few days. Then once a week to the INR clinic in my doctor's surgery. Now every 2/3 weeks. I think I'm quite lucky in that my INR stabilised very quickly at a fairly low dose of Warfarin, and, touch wood, I haven't had any significant side effects. But the treatment your husband has received (or not received!) is nothing short of scandalous, not to mention dangerous. If I were you, I'd be changing my GP!

    • derek76
      derek76 lucy02639

      Posted

      The longest time I was given between appointments was six weeks long after my INR had stabilised. I was then prescribed an antibiotic for a kidney infection and told due to the change in medication to have it checked the following week. I then had several other medication changes over the next couple of months and was back to weekly checks. Each change in medcation can effect your INR as can dietry changes. I had a Greek meal one night and the next day my INR had changed.

       

  • lucy02639
    lucy02639 bowman

    Posted

    Just to back up what Derek says about PALS; I used this service a little while ago when my MIL was having the runaround about missing notes at her local hospital. I found them very helpful, and they obviously got straight on to the department concerned, as within a couple of days I had a very apologetic phone call and miraculously, the notes were found.....! I think you really should get on to them, as it's just not right the way your husband is being treated.
    • bowman
      bowman lucy02639

      Posted

      Hi Lucy. We went to PALS first. Never had a reply for about 14 weeks.

      Tried sitting on their doorstep but it never seemed to be manned.

      Wrote to the Chief Exec...waited TWO YEARS for a reply. I have a feeling that the other person, who's drugs my husband was handed on discharge, may have passed away and the hospital doesn't know how to sort it out without admitting it happened.

       

    • derek76
      derek76 bowman

      Posted

      They didn't help, the Ombudsman didn't help. Have you been to your MP's weekly surgery? They get problems like this all the time. A solicitor may be the next move or your local paper they love stories like this. So do Regional TV News Stations. South East News has weekly horror stories from Kent Hospitals.

      Where do you live?? It sounds like Wales from other stories from the press lately!

       

    • derek76
      derek76 bowman

      Posted

      When I contacted my local PALS I had a reply within two days and exchanged several E-Mails with them. Later I contacted the one at the hospital I was waiting to have heart surgery at about a longer than promised wait.  Two weeks later I was in.

      A GP I once had had tried to get a 26 week waiting time for an appointment more quicklyfor me. He only got it down to 21 weeks. He then suggested Patient Power, saying they don't like patients phoning them up. I did and was seen the following week.

      I had a problem with a urologist at our local hospital and wrote to the Chief. Two days later I got an aggresive phone call from him... he soon found that I could shout louder than him

       

    • lucy02639
      lucy02639 derek76

      Posted

      I just think all this goes to show the inconsistency of provision between areas and individual hospitals.I have had excellent service from my local hospital for the anticoag stuff, but also for several other problems - for example, I have had cataracts removed from both eyes in less than six months from the original referral from my optician. But I've heard stories of other regions where people wait for years!
    • derek76
      derek76 lucy02639

      Posted

      I'm in East Sussex. I had eye appointment on July 12th last year and first cataract done on August 14th and the second one on October 7th.

      The second one was rather fortunate as I had phoned with a problem with dryness in the first eye. The nurse asked when the second one was being done and I told him that I was still waiting for the date. He said that he would see what he could do. I then got a phone call offereing me a cancellation. When I hesitated I was told that the next date would be the end of January.

      A friend in Edinburgh had her first one done last July four weeks after seeing consultant. She had a date for the second one in February but had to cancel it. It is now being done next week.  

  • lucy02639
    lucy02639 bowman

    Posted

    Oh dear. Well, now I've run out of ideas - apart from definitely getting a different doctor.
    • derek76
      derek76 lucy02639

      Posted

      Another option is to ask for copies of your notes from your GP and the hospital.

      A friend did and found her notes were full of erors that her GP admitted to. When I lived in Scotland I got myself referred to an English hospitaI for laser surgery that wasn't done in Scotland. They asked me to bring a copy of my notes from my GP.

      Top of my notes said that I had ischaemic heart disease. I queeried it with my GP who said it had been carried forward from my previous doctors records and came from a hospital twelve years before. This he said is obviously wrong in view of your later history and and a recent angiogram showing that my arteries were normal.  

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