What should I do?

Sorry this is long… but it has a genuine ‘what should I do?’ at the end, so bear with me…

As you know, on Thursday I came across the only medical professional that I’ve found incredibly difficult and rude.  I also suspected she wasn’t very good but I had no evidence of this. I blogged that if my INR dropped again today, I’d tell you the other bit of the story about her. It did, so – unfortunately – I now have evidence. So let me tell you the rest of what happened. Then you can advise me what to do about it.

(If you have no idea what I’m on about, read Seriously naffed off and This Too Will Pass first. But, basically the woman in the anticoag clinic was rude and didn’t listen to me and, I suspected, and now know, did the wrong thing too).

Anyway. My INR today is at 1.7. It needs to be between 2 and 3 to protect me from further strokes from the blood clot that’s still in my neck. Warfarin is the drug that increases one’s INR but everyone is different, so it generally takes 6 days to stabilize the dose. They take blood every day during those days and alter your dose accordingly until it hits and maintains within the therapeutic range. We’ve been working on this for 11 days so far, and I’m still not on a stable dose yet.  While they are doing the stabilising, you also have daily Clexane injections as well. The Clexane keeps your blood thin until the warfarin takes over this job; once you’re stable on warfarin, the Clexanes stop.

This is my personal graph – warfarin is dosage in mg, INR is the level it was at (tho days I didn’t get tested I’ve put in a midpoint to make the graph work (medics will want to know that!)) clexane is 1 if I had it and 0 if I didn’t:

So why am I worried about the nurse. Well, on Thursday I switched from getting my bloods/doses done in ‘trolleys’ (the acute assessment unit where I’ve been going every day) to the anticoagulation clinic. You can read previous posts for nearly all that story. The bit I said I wouldn’t tell you unless my INR dropped is as follows:

When she gave me the warfarin dosage and said I didn’t need the Clexane I questioned it and she said it was fine: I trusted her on this bit – after all, what do I know. However, I wanted to know how we’d know if that was doing the job, seeing as it was Thursday (28 Oct) and I wasn’t going to see her until Tuesday (2 Nov). I’ve been watching this every day and it seemed fairly obvious to me that if she didn’t knock up the dose properly that the INR would drop. I don’t want another stroke – thank you very much – so I asked the question. She said that if I was “that stressed about it we can get you back in to trolleys on Saturday if you want” and I said “well of course I don’t want, I’m asking the question really, if you tell me its fine then Tuesday is fine, I’m just checking you’re sure” and she said, “well I think you’re stressed about it so I’ll bring you in to trolleys again on Saturday”. (See previous note about how she then went on to give me a fatuous lecture on getting on with life (which still makes me mad, what the heck did she think I was doing? If I’d stayed as long as they suggested – i.e. until the warfarin was stable – I’d still be in there now!!!). Anyway, I kind of wanted it checked on Saturday because I wasn’t entirely sure I trusted her, so I shut up.

Anyway the INR dropped.  And because I had no Clexane cover, I had to go back to the hospital for a second time today .  (And getting back is no mean feat in itself, let me tell you!)

The good things to come out of this – and it’s important to note them! – is I got them to let me do the jabs myself, so I don’t have to go in tomorrow because I can do it myself now.  And, I feel safer again knowing someone sensible is on it instead of her.  And, my headaches have gone again this evening, possibly because of the drugs (?!), which is always good.

So… I felt rubbish last night… I felt really rubbish this morning. Which now makes complete sense. Then I had to go back to the hospital for a second time today to fix the issue. I believe this happened because she (a) didn’t listen and (b) didn’t take appropriate measures. I’m not going back to her clinic as, even if there is a problem with my GP taking over, I’ll simply find a way to ensure this doesn’t happen. However I have a quandary. I know I can’t do nothing, because there are stroked out 80 year olds – and, actually people my age who didn’t come out of it as well as I did – who are relying on her and not up to questioning what she’s doing.

(Heck, I was only questioning because she wouldn’t let me write things down in a way I could understand and kept snatching my yellow (anticoag record) book away so she could write down her version (Me: Are you going to keep snatching it like that? Her: Yes Me: We’re going to have to think about a system if this is going to work. Maybe you could write in a spare book so you have your own and I’ll bring it with me every time for you, and I can keep this one I’ve had for 2 weeks. Her: No, you can transcribe what you want but I’m going to do this as I want it to flow. Seriously. She had about 50 yellow books there: she could have done anything she liked; all I wanted was control of my own bloody book that Duncan had given me and I’d been keeping with the trolleys people.  It’s the only way I know to keep track of what’s going on. She was actually rather lucky she upset me and I was trying not to let her see I just wanted to cry, else she’d have gotten it with both barrels.))

Anyway. Bottom line. Her dosage was incorrect. And she stopped the Clexane which would have provided cover til I was back in range. If I hadn’t had made a fuss I would not have found out that my INR was out of range until Tuesday, by which time it would have been far lower; no one would have upped my dose (which they did today); there was no Clexane protecting me in the meantime (which there is now). Basically, I could have had another stroke or three.

With the strokes I had there is a 10% chance of death and a more significant chance of proper damage (which I got away with last time). At the very least I’d be in hospital all over again and starting from scratch. I’m ok, and this isn’t going to happen to me because, even in a mildly dazed state (which in hindsight I was) I was pushy enough to question her and take responsibility for my own care. The more stroked out can’t do this. Hell, some days I can’t do it.

I don’t think this woman should be working unsupervised. I don’t want to make trouble – not least because I’m in this system for another 6 months and I don’t think I’ll get a good run of it if they think I make trouble – but, basically, I think she doesn’t listen and is dangerous as a result. If she worked for me, she’d be removed from post immediately and not be allowed to work unsupervised until she’d had further training and been signed off as competent.

In most situations I’d take the problem to the person involved. That is still an option. I could write a letter to her and take it to her at the next clinic. But I won’t know til the day if it’s a day where I’m up to it.

So… what should I do?

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8 comments

  1. C, this is awful :( Yes, lives are at stake, and you are right, something needs to be done right away.

    You were lucky. Because you were well-educated, articulate and had self-confidence, you were able to make sure your stats were checked today (Saturday) instead of wanting until Tuesday like the nurse wanted. Many of the elderly patients in her care may be too ill to realise they are not getting the meds they need. In addition, older folk are less likely to question anyone in a white coat, and that is also a risk factor. Unless somebody blows the whistle, their lives could be in danger. The fact that she insisted on writing her version of the facts in your book is a point against her.

    For these reasons, please seriously consider notifying the nurse’s supervisor ASAP as well as the hospital’s CEO and/or matron. (I am not sure of the current UK usage, but you will know who I mean.) Your best bet is to start with a phone call and follow up with a letter. Be sure to keep copies.

    I would not suggest talking to the nurse in question about this at all. If at all possible, keep away from her completely. Not that I can imagine you wanting her to go anywhere near you!

    Please keep us updated. This is a very serious matter and should be treated accordingly.

  2. Jayne says:

    Report it … to her supervisor, your doctor and anyone else who is in a position to do something about it!

    If you don’t feel you want to do it, I’d be happy to do it for you and from what I have seen of your friends anyone of them would as well!

    • Char says:

      Jayne you are right – Kate and Caroline already offering. Thing is that I want her to hear it from me. I was there, she basically treated me like a kid and didn’t listen. So I don’t want an advocate, I want her to have to listen to me as she should have in the first place. I don’t want to make trouble – the point isn’t to kick anyone. But somehow she needs to recognise she has some serious issues and yes, I think I probably need to make sure – somehow – she’s not working unsupervised. Hmm. Might get you to proof draft letter!

  3. Nora says:

    Next time you go, make sure you’re accompanied by a very impressive male/female and tell her s/he is your attorney and they’re there to ascertain that you’re getting proper treatment and the right diagnosis or else you’ll sue. Yes, people can and do sue the NHS and win their cases. Or else sit tight and tell her you’re not going anywhere or letting her treat you, UNTIL you speak to her senior nurse/officer/administrator. Complain about her a) attitude b) lack of bedside manner c) bully tactics and inability to communicate in a civilized and clear way and say that there is a history of this and you’re surprised no one has reported her before.
    Nora

  4. Claudia says:

    I am with Norma on this one. It feels like the nurse will not be sensible when you talk to her again, therefore this is a deadend street, instead you might get upset trying to talk to her again and waste more energy on her, energy which you need for more constructive things and yourself. So I would inform her supervisor. If you feel you do not want to do this behind her back you could send her a three sentense letter saying that you comtacted her supervisor and that you would talk to her if she wants to when you are better…

  5. Elisabeth Megitt says:

    Hi Charlie, We’ve never met but I’m Nigel’s wife, and a doctor. I’ve been really interested in what you’ve been writing, a very unusual perspective for me (I’m afraid to say, but true..)

    This thing about the warfarin clinic nurse is appalling. As Norma said, you are in a fortunate position to be educated, intelligent and articulate, so just imagine how she makes other patients feel who are less able to advocate for themselves.

    I reckon the most constructive thing you could do, which would help you and other patients, is to write to the chief executive of the hospital, stating clearly the medical errors that were made, and also the patronising and rude way in which you were treated. Hospital trusts take complaints really seriously..this nurse isn’t doing anyone any favours. I can’t imagine it would be helpful to talk to her – you tried that at the time, and she treated you like a fool.

    I wish you luck

  6. Elisabeth Megitt says:

    A PS: The hospital will have a PALS (I think it stands for Patient Advisory and Liaison Service) who might be a useful first stop if you want to make a complaint…they can point you in the right direction and support you through the process

    • Char says:

      Hi Elisabeth… I know what you do for a living so I’m going to take your advice on board – thanks… I can’t tell sometimes if I’m worrying about the right things, so it’s good to know the brain got this one ok. I’m also seeing my GP tomorrow so – hopefully, fingers crossed – I can cut a deal for them to do the warfarin thing (they have a warfarin clinic on site, just they dont usually take you til you’re on a stable dose). Then I think I’ll be happier to write. I’m going to be clear that if they will reassure me that they are looking into it then I don’t feel the need to be contacted again – cos I don’t want some long drawn out thing… but she worries me because she’s kind of stuck in a rut that doesn’t make allowances for any kind of variation to the ‘norm’ (whatever that may be).

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