Positive news

Just wanted to say that I went to the Lupus Clinic today and came away feeling really cared for and supported. So often we tend to report difficulties and forget the positives. I was pretty sure I was flaring and explained my symptoms and was really listened to and felt I was being understood. Treatment has been prescribed just on talking through things and a physical exam (back on steroids for a while!). And lots of bloods taken to check and follow through.

So although I am upset to be flaring (and feeling very rough to be honest) and a bit sad at having to start steroids again (came off them over a year ago) I know it is for the best because it was discussed properly and I was given all the information I needed.

So big gratitude to my lupus team who help me feel secure and looked after. That means loads. And all on the NHS At a hospital on my doorstep. Lucky me .

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13 Replies

  • I'm glad you feel you were treated properly,I've got my first rheumatology appointmenf next week and I hope I come away feeling listened too and some medication.as I type this my whole top half of my body aches even my fingers xxx

  • Oh I'm sorry you are suffering. This illness is the pits. I know what you mean about aching to the fingers. I did change to current hospital 14 years ago after bad experience during the period of first diagnosis. I phoned Lupus Uk and got a recommendation for a new consultant. The current clinic has been great and although there is sometimes a wait there is always time given to talk through stuff. It Helps to have a list of key things (not tooooo many!) to talk through so you can focus on most troublesome stuff. Good luck. Hope it goes well and you get some help xx

  • when lupus uk recommended a consultant did you have toget a referral from your gp?

  • Hi. Yes I asked the GP to refer me for a second opinion. She was happy to do this. I think you have to go via GP even for a private consultation but mine was all on NHS. I asked Lupus UK if there were any lupus experts in my area as my then rheumy did not seem to understand the problems I was having at all. It was 15 years ago, things have changed a lot since those days. Thank goodness xx

  • by law you can choose where/with whom you get your care. some of the medical profession don't like it but hey its your body

  • Hi sjink,

    I'm thrilled to hear that you left feeling reassured although slightly disappointed at being back on the dreaded steroids.

    It really frustrates me when you leave the hospital or Dr's surgery non the wiser and still having unanswered questions.

    I hope your flare subsides soon and the steroids work their magic.

    Take care, Sarah x

  • Thank you for sharing your positive experience story.

    So sorry you're flaring and going back on the dreaded steroids. Here's hoping they're only needed for a short while and that you're well again soon.

    I was very lucky to be triaged to a lupus expert straight away based on my referral, and have had wonderful care on the NHS ever since. I have had a few less pleasant experiences where I haven't hit it off with certain doctors, but overall my care has been excellent. In the main I think the medical team genuinely want us to be as well as we can be and are as frustrated as we are when they can't get us pain free and feeling good. Sometimes we need to recognise that and acknowledge that with our medical team. I'm seeing my rheumatologist next week for a routine review and I've decided to take a big box of chocolates in for the team, just to let them know I appreciate them.

  • Hi thanks for your reply. I agree about appreciating our health practitioners. Especially when dealing with such a complex illness. My care too has been overall excellent and the lupus team refer me on to others (eye hospital, dental hospital, neurology). Am Very lucky. Xx

  • Hi Sjink, I hope you are soon feeling better and so glad you have a good team behind you. I too can relate as had a visit with my very knowledgeable rheumy nurse yesterday. My rheumy nurse then went to speak to my rheumy about my treatment plan and fed back to me. Like you I feel listened to and that I am being given good treatment. They also squeezed me in a few weeks early because of symptoms I had been having and blood pressure problems. It certainly makes living with this easier..... I hope your flare up ends real soon too xx

  • So what was the verdict re your symptoms, M?

  • Thank you. I think it's important that newbies get these positive stories. And know they can change consultants if not happy. Not sure how this referral system will work with changes to NHS but Lupus UK seem to be good t keeping us up to date xx

  • Hi I will pm you Purpletop as I don't want to 'hi-jack' another person's post.

  • Ha ha. I don't mind - it's all good info x

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