I have my 2nd appointment tomorrow with my GP with specialist interest in skin, first time since all this kurfuffle with officers at HB

Tomorrow I have my second appointment with the GP with specialist interest in skin. He took over my care when my Knight left in September 2016. First appointment with him was November, when he told me to be more patient with the MMF.

Follow up was due in January but I couldn't make it, so re-arranged.

So this will be my first appointment with him since I meet with the two senior health officers at my MPs office, which subsequently ruffled a few feathers. I know they got my records out and all had a meeting to discuss my case. And I'm not stupid, I know they all think I'm a pain in the ass.

The GP seems personable and nice enough but my point was he's a GP and not a Consultant Dermatologist. And he's the one leading my care apparently, not the Rheumy.

I'm tempted to cancel and not go. But is that being cowardly? Or should I just go and be my normal smiling happy self, pretend nothing is wrong, brave it out. I don't have anything to be ashamed of. Just wanted an expert second opinion and a referral to a Consultant Dermy in Cardiff. Just feel like it might be awkward.

Of course I now know I'm going to London Bridge in less than a month too.

I also know I can't burn my bridges completely at local hospital.

Should I go? Or should I cancel?

Decision time.......😩⏳

35 Replies

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  • Go. And be nice and pleasant.

  • You are right. And I will. Believe it or not I hate confrontations and will do anything to avoid them these days. They sap my energy. Hopefully he'll just be pleasant about it all. 😬 Deep breaths. X

  • Wendy, it's time to let that inner strength resurface once more! Head up, shoulders back and big smile even if you are shaking inside! It's the GP who should be feeling awkward seeing you as he let you down. Sleep well and be strong. 😊 Bronagh

  • Go for yourself.

    And, go for all of us. We know how difficult appointments can be.

    We also know how hard it is to be understood during consultations. This can often be due to the lack of empathetic, compassionate, professional communication skills of the medical practitioner.

    At my last appointment an allergy consultant (GP referred), didn't get as far as carrying out a proper assessment before he gave an opinion that my extremely dry cough and rash flare ups, was psychological.

    Having an invisible illness (sjogrens diagnosed query lupus), is hard enough but when a consultant is so opinionated, and dismissive it becomes insulting.

    I returned home, found evidence that my symptoms are sjogrens related and decided to contact PALS.

    I asked PALS to request a copy of a letter the consultant intends to send to my GP, saying I also expect evidence he used to diagnose my symptoms as psychological. I did this for me, and for all of us on these forums that feel many medics think our symptoms are ' all in our head's!

    PALS have been very helpful. I will post the outcome of the investigation when it arrives.

    The way I see it is, my bloods show antibodies that diagnose sjogrens, symptoms overlap with lupus and hypothyroidism (diagnosed 25 yrs, managed well for that time, then thyroid meds over prescribed led to thyroid suppression, again bloods and dermatologist diagnosed, levothroxine since reduced twice).

    Rheumatologist prescribed hydroxychloriquine saying it would treat sjogrens query lupus. So, if the allergist is correct, is the rheumatologist and dermatologist wrong and are blood results meaningless, if symptoms are in the head? Are medics just dishing out opinions?

    Finally, the way I see it, if my symptoms are ' all in my head', he can try and use my dissatisfaction with his (not ours, no partnership in care provided), consultation, as his evidence or will he accept that actually, there is nothing untoward with my mind, nor indeed my self esteem!

    Best wishes, I am rooting for you. Your body, your health, your right to best practice within the nhs. That is worth fighting for.

  • Webar this is one of the best and most powerful responses I've read here on HU. I think what you did was brilliant and more people here should do this too if they possibly can.

    Wendy - it's daunting I know but Pro is right. Please don't duck out of anything when you've got this far. Hopefully the GP will surprise you. Head up high and meet that gaze. You aren't a pain in the ass you are standing up for what is right!

    Although I agree that there is a big difference between a special interest GP and a consultant - my experience is that good detectives comes in many guises. I have been misdiagnosed with Lupus and Scurvy by a professor of dermatology (a very nice chap though!) and then immediately rediagnosed by my GP (with not even a special interest) with Raynauds and allergy to Nifedipine. The GP was right of course. Now he is telling me the Pompholyx blisters on my fingertips are Raynauds related/ vascular. Quite compelling but he has also got things wrong with me in the past so I'm minded to sit on the fence with ouchy, discoloured fingertips. What I'm trying to say is that doctors can easily make mistakes but it's how they make us feel in the process of getting it right or wrong that is paramount. Xx

  • Thanks Twitchy, you are right of course. He could turn out to be very good. We'll see what he says tomorrow. I know I have to go. Apart from anything he ran 1 hour 45 mins late last time I saw him, so that prospect alone isn't great. But I will go and I will smile. For us all. X

  • Oh poo. But then you have to keep telling yourself that he's giving his other patients his all and not being bound by some ten minute rule - a good sign really? Best of luck - keep Coco's charming but firm advice in mind - I always try to now and it works for me! 🀞🏽 xx

  • The GPs with a special interest I have met were pretty useless! The exception is my GP here - who is rheumy qualified anyway in an earlier life.

  • Pro, totally unrelated, but I have now discovered that I can still amend my posts and replies for typos and spelling mistakes etc on my lap top. It must be just the new mobile phone app that wont let you amend your words? I am finding it very frustrating as do tend to use my phone more these days. And I like my posts to be spelt correctly and make sense! Ha ha.

    I have now posted about my mornings appointment.

  • Thank you for your lovely response and I'm sorry to hear what you have been through too. It makes me so angry that we face these battles on top of everything else. It's 2017 for goodness sake. And the stress that these battles cause us is not good either. One way or another the illness takes over. Your daily struggles with a body that is at war with itself. The blood tests, the various doctors appointments and X-rays etc. The letters and phone calls. It's time consuming being unwell. I need to learn how to deal with it all better. The stress has made things worse recently. I'd never heard of PALS, that sounds like a great way of dealing with unhappy patients. We learn new stuff every day don't we. Stay strong. Keep fighting. X πŸ’œ

  • Thank you Twitchytoes. Though it is people such as you that help me stay strong!

    I also agree with all you say on this post.

    Hope you aren't suffering badly at present.

  • Oh heck well we all urge each other onwards here don't we.

    SjΓΆgren's is throwing everything at me just now and I love that you were a warrior for our disease.

    Sometimes I feel that it's defeating me and that's largely due to the perceptions of others about this disease - including most doctors. It's such a miserable disease to lobby for.

    I'm so sick of the gender and age related assumptions it seems to carry with it. Even I end up saying to myself and my doctors "surely all this crap can't just relate to SjΓΆgren's can it? I must have something else going on that is causing discoloured, painful fingertips with blisters, nose bleeds, Raynauds, GI problems both ends, dry throat and persistent cough, kidney problems etc?" So why do I find it hard to accept that it's all probably SjΓΆgren's related and even Mycophenolate isn't enough to stop it from flaring madly? Because it's such a misunderstood disease is why?! X

  • How much Mycophenolate are you on, out of curiosity?

  • 2000mg - I think you're on 3000 aren't you? Husband was just saying how strange it is that I've never caught his nasty head cold despite being immunesuppressed.

  • Yep: go, be your calm, composed self. Shake his hand, or whatever, and say something like: how are you today? Then sit back & let him show you how he is going to play this now.....which could well be really revealing & very interesting πŸ˜‰

    πŸ€πŸ˜˜πŸ€πŸ˜˜πŸ€πŸ˜˜

  • You are right. If I'm my nice smiling self, he will have to take charge. We'll see how it goes. He may have ideas for coping with flares in future and I want to ask (again) when my Vit D levels were last checked and what they were. I might even show him my rash πŸ˜œπŸ™ˆ xx

  • πŸ‘πŸ‘πŸ‘πŸ‘ Go for it πŸ€πŸ˜˜πŸ€πŸ˜˜

  • Good luck for tomorrow if you decide to go πŸ˜€ good support behind you from forum....may pass you in the hall, xray early πŸ’€ I'll be the one with toothpicks propping my eyes open...ml

  • Good luck with your X-ray. Let me know how it all goes. I know I have to go. Just needed a little shove. It's the right thing to do and no point delaying it. X

  • Hi Wendy

    Good luck for tomorrow and your Dermy appt. just be your normal self with head held high. You have done nothing wrong. Look forward to how it goes. Be brave. X

  • Thank you! We have to be so brave, all the time don't we! I'll let you know how it goes. X

  • As so many others have said, you have done nothing wrong and have nothing to be ashamed of. It's the doctors who failed you who should be ashamed.

    I'd say go and be yourself and let him lead. You may be surprised.

    You've fought hard with this battle so far so you deserve to get some rewards at this step.

    Good luck, if anyone can do it, you can. Keep us posted please X

  • Thank you. X

  • Hope all goes well, I am a little pessimistic about this GP., you seem to get more of a response from him then me, maybe my twang is to challenging....do count the staff in the room I feel we maybe rarities that need to be observed .....still have to contact rheumy to find out who is dealing with xray results tomorrow is it them or gp, as I was cc into gp letter from Dr. B, no mention of lupus....just the xray...

    Go for it I say, wish I could be a 'fly on the wall' and see what he says after your meetings with the board...😊 ml

  • Thank you' I'll let you know how it goes. When I've had X-rays and MRIs I've given it 2-3 weeks to be reported on and then gone to GPs to ask for a copy. They've always printed one off with no questions asked. I've also got all consultants ccing mr in on all letters, that way you'll get what they tell your GP too. X

  • Wendy go for it; they are there to help you. Smile it will make folk wonder what you have been up to! Best wishes Kevin

  • Definitely go, Wendy, with a smile. He will probably feel awkward. As far as his special interest in dermy goes, who knows how much expertise he has? I don't know whether you have checked his qualifications. I was wondering this, and whether he had originally intended to specialise in dermy, but then became a GP. This would mean he has far more dermy knowledge than your average GP, a better way to put it than a "special interest" .My boys had a GP like this when they were young. The chap had actually specialised in dermy, then decided being a GP would suit him better. Saved us an unecessary trip to a dermy then.

    Don't bother a bit about the case you brought before. You were there for your wellbeing, and it simply shows how strong an advocate for your health you are.

    If all of this is babble, be gentle with me. Dragged myself up early to be ready for my appointment today x

  • Thank you for your lovely reply. I just needed a boost of confidence I think. I knew deep down I had to go. I am always pleasant and smiley. So will do my best. To be honest, still getting over this flare and been spending my days between school run, in bed, so will take a lot of energy all round, but so be it. Good luck with your appt. I have everything crossed for a positive outcome / helpful caring doctor for you. Speak later? We'll swap notes! X

  • Good for you! Yes, speak later. I'm in a ridiculous mindset expecting them to throw me out, saying there's nothing wrong 😱 x

  • Stay positive! X

  • Best of luck LK. Of course you are panicking because no time to prepare mentally or physically. You know they can't an won't throw you out because it would be wrong.

    Head up high and remember we are all in your pocket in spirit so go for it! X

  • Go, be yourself. Your GP provides a service that you pay for. Explain what you want and expect professionalism.

    And by the way top marks for " kerfuffle" may family use it the time!

  • It's a great word isn't it?!? x

  • Best of luck Wendy 🀞🏽🀞🏽🀞🏽🀜

  • Wendy39,

    Hope all went well for you.

    PALS stands for Patient Advocacy Liason Service.

    PALS is part of the NHS and patients are encouraged to use the service especially when service has not felt satisfactory.

    The reason I contacted PALS to deal with my dissatisfaction is because the PALS team can communicate on our behalf, without being emotionally involved. Additionally, as you say in an earlier post, suffering ill health is extremely tiring. We really do not have the energy sometimes, to deal with anything else.

    Take care.

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