Hi. Me again. If you have been following my posts you will know that you have all dragged me back from the darkest place I have ever been. I have been given love and support, advice and found the name of my nearest Lupus specialist and now am going to ask a GP for a referral.
Have you done this? How did you achieve it? Was it easy? Any legal or buzz words to use? Did you go out of your area? Any problems with that?
I have not been having any support from my gp surgery from junior doctors, so my husband is going to try to get a senior g p to see me and refer me.
Any help, as always, in your debt you clever, knowledgeable supportive lot.
Love hugs
⚽️
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Footygirl
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GO FOOTY GO 💃⚽️🍀...great plan to take hubby along & see senior GP!
In 2010, the first rheumatologist my GP referred me to re possible (haha) autoimmune disorder was at a standard rheumatology clinic in our area. He told me that he suspected lupus. He ordered the usual blood tests but said he suspected they wouldn't "tell us anything". Meanwhile, he put me on niifedipine without warning me to stop immediately if I had a bad reaction (which I did 😤 ). Then my mother revealed that I'd been diagnosed with lupus as an infant & teen...and at this point I was in my mid/late 50s..😅...This revelation got my dander up...I realised I'd actually felt vvvv weak & non communicative vibes from that first rheumatologist....and that he'd actually negligently hurt me via the nifedipine (various of my vascular symptoms were permanently worsened by just 3 days in it). I felt i had no time to loose if I was ever going to get some life back...I felt I really needed something better than him...
So I sought out a lupus clinic in our region at an international teaching hospital ...and actually managed to get my fav GP to refer me to that clinic even though the hospital is not inside my gp surgery's standard referal region. I did have to be very calm & confident when making this request...at first my GP tried to put me off by telling me that the GP surgery committee (or whatever) might say no. But I just calmly said I FEEL SURE THIS REFERRAL WILL BE APPROVED BECAUSE THIS famous hospital IS THE NEAREST LUPUS/CONNECTIVE TISSUE DISORDER CENTRE and WE ALL KNOW HOW RELENTLESSLY MY MULTISYSTEM DEBILITATION HAS BEEN PROGRESSING WHILE YOU'VE BEEN TRYING YOUR BEST TO HELP ME HERE (😜). I got that referral and this wonderful lupus clinic has truly come up trumps for me....as a result, at 62, I'm getting much improved full-on regular monitoring, investigations & treatment from all my hospital clinics as well as my GP surgery....and feeling better than I have since my 20s
I'm sure you'll get great tips from others here on forum,...that lupus clinic is my only 'out of catchment area' NHS GP referral, mainly my other NHS GP clinic referrals have been to hospitals within our immediate area, so I am not very experienced really....(but the majority of the clinics I attend regularly now are at the same famous hospital as my lupus clinic, because issues that have arisen since I began to that clinic have been directly related to my version of lupus and resulted in a rheumatology referral direct to colleagues at the same hospitable + instructions to my GP letting her know the consultant I should see eg immunology, ent, max fac, ortho surgery, physio).
I have organised private referrals further afield: they're easy to get!
Looking forward to following this discussion
XOXO
Hi Footygirl,
I think under NHS England rules you are entitled to a second opinion and a referral to a specialist of your choice.
I have found that getting Dr's to document things makes a world of difference. If they refuse to refer you to Prof Bruce then I would ask for their clinical rationale in writing and for them to put your request and their refusal in your notes, they can't then deny that the conversation took place. I will see if I can find a link re your legal rights.
Thank you so much for that information. This site and the people on it are amazing.
I never knew about these rules. I am armed and dangerous now thanks to you. We shall study the links as appropriate and know our rights confidently and we will not be denied. Especially as I am deteriorating. I do not think his junior colleagues have done the surgeries rep any good.
I can't add anything else to Barnclown's great reply but just want to say it's a good idea that your husband is trying to get you seen by a senior GP . If that doesn't work are there other surgeries near you to try?. Good luck for when you see your new Rheumy, you really do deserve better treatment and I look forward to hearing how you get on. X
I'm not aware of any lupus specialists in Swansea. I have a feeling your nearest may be Dr Julian Nash at University Hospital Cardiff. If you'd like a recommendation for somebody closer to Swansea then I could provide you with a telephone number for our volunteer lupus Contact in the area and they could tell you who they see?
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