Hello, im new to the site and have recently just been diagnosed with SLE. Im just wondering if anyone else has trouble with their drs not understanding. By drs i mean GP not the hospital dr. The one i have is amazing in the hospital but im on a share care plan with my gp but they are absolutley useless. For start i had to go to a private hospital for my diagnosis as they were telling me my blood test were fine when in actual fact they were far from fine. So now im back over to the nhs with a wonderful dr in the hospital but with the meds im on i have to have bloods taken every 2 weeks i had my first with the hospital and the next set due this week is supposed to be arranged by my drs but ive literally been trying to get blood forms from them for a week and they are totally clueless even tho the hospital are saying they have sent them the care plan so should know what they need to do. So i was just wondering is this common thing the gp drs not really knowing what to do with lupus patients or shall i look into moving drs. I just feel they dont really care and arent willing to find out about my condition and what their duty of care is. Sorry for the long post.
Anna
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My rheumatologist gives me printed labels for the bloods, I just give them to the phlebotomist either at the hospital or at my surgery and they take my blood and use the label I give them.
Maybe try speaking over the phone to your consultants secretary? Perhaps they could send you something by post, or atrange for you to collect it from the hospital?
When I asked my gp if she knew much about lupus, her reply was "very little". My feeling is that lack of knowledge is common in local surgeries, I dont rely on my gps at all I just stick to the rheumatology department for information etc...
Generally speaking hospital info is passed on to my gps and if actions needed they deal with it straight away. I'm sorry you're chasing blood tests and results, thats bang out of order, keep on at them is all I can say
Some time ago the hospital told me to get my bp checked regularly at my gps. I made the first app, went down, passed on the info about getting regular checks and was told to buy a machine and do them myself. I came out dumbstruck, went straight in the chemist next door and bought one. I've been taking it ever since and record it. I see rheumatology once a year and the specialist nurse there said it was important my gp surgery did the checks....I guess times have changed
Anna, I don't have anyone looking after me. I am diagnosed with sle/sjorgrens overlap. I also have hashis and adrenal issues. I initially went to a private gp who referred me to consultants privately. That's when I was diagnosed and private health covered it. They don't keep covering chronic illness. I then went and explained to my nhs gp what had happened and he 'took over'....i.e. they provide my meds. He never sees me, and when I go because feeling rubbish, he says 'your bloods look fine'...I think he means esr not raised and that's it. I could go back to private rheumy..but v expensive. I don't know what to do, but pretty sure that someone should be checking us every now and again!?! I hope you get sorted. Please let me know if you decide to change doctors...I might. My problem is that this one provides me with very expensive thyroid medicine...most NHS doctors won't!
Puffyface, that is appalling. You must chase this up. I thought my situation was bad - have SLE osteoarthritis etc and new NHS Rheumy just told me that she wont see me again. Just Dermy to look after me, (who is actually a GP with a specilaist interest in skin and knows nothing about lupus) which is not sufficient for someone with SLE. But if you have SLE, Sjogrens, Hashis and adrenal issues, you should be seeing someone for check-ups and monitoring. Who does your bloods and your urine tests, blood pressure etc? What meds are you on?
I am going to London Bridge Lupus Clinic for a 2nd appt at the end of this month, as I have no faith in my local doctors. First appt was, from memory £190 for 1 hour and second appt will be £230 for 1/2 an hour. I am hoping that as I seem quite stable at the moment, I will be able to just go to London once a year or so. I haven't ever got tests done there though, I always take my monthly bloods from my GP surgery etc. Xrays. MRI reports. All doen on the NHS and taken to the appt. My GP supports this.
I also have private medical insurance, with my husband's job, but they will not monitor chronic conditions. So I've had a few one offs with Rheumy, Neurosurgeon and Dermy, but that's it now. So frustrating. So have used, insurance, NHS and private.
Anyway, go back to your GP. Ask for a second opinion on the NHS. In England you are entitled. But check out who you want to see first. Get in touch with Lupus UK. They can tell you where your nearest centre of excellence is or recommend a lupus expert close by. Then when you go to your GP to ask for another referral you can be very specific. A post a few months ago, was from someone who had got a GP referral to general Rheumy, but then found out here that there was a lupus specialist just a few more miles away, so was able to go on-line and get her referral redirected to the lupus specialist, without seeing her GP again. Apparently she could see the waiting list times etc this way too. Worth looking into anyway.
Please don't leave it this way. Get a further referral. Or complain to PALS at your hospital (Patient Liason Service, can't remember what the A stands for).
Let me know your thoughts. But your health is far too important to accept this status quo and lack of care.
Really? I have a brilliant team in the hospital do you not have that available to you? I started with joint pain and it was serverei couldnt even dress myself as i couldnt use my thumbs it got to the point where i couldnt walk. I was have bloods done at my gp and when ringing for my results they were telling me everything was fine. They referred me to the rheumathoidologist but it got to the point where i couldnt wait any longer i had 2 kids that i couldnt look after i could barely roll out of bed. So i had to pay ti go private as they told me they would diagnose me there and then. I went and seen lovely dr called dr Mclaren and she was gobsmacked when she read my bloods and everything from the drs they had actually tested me for lupus and double dna all of that and they were all positive so i think ive lost a bit of trust with my gp there as they were making me think i was mental whilst it was all there in bkack and white. Luckily dr mclaren is also the dr that would of seen me 2 weeks later in the nhs so she just referred me back to the nhs and now i dont pay i have to have bloods every 2 weeks and a hospital appointment every 4 i think when its "controlled" the appointments wont be so often but it must be a worry for you not being monitored. Have you thought about going to your drs and asking if you can be reffered to the rheumathoid department at your local hospital. My plan is to ring aroundmy local drs see if any are aware of lupus and maybe ask them to take me on.
Hope you get some guidence too im learning its a very lonely thing to have.
If u are in the uk they are known as amber drug monitoring bloods or DMARD blood tests (disease modifying anti rheumatic drugs)
The 2 weekly bloods are tomonitor ur full blood count, u&e ( kidneys) and liver function and possibly crp but that's not always necessary or useful with lupus but if u are on methatrexate they may check it.
All surgerys will have a protocol for what bloods to take for which 'amber drug'.
But yes I agree, there isn't enough known about lupus or antiphospholipid syndrome and it's frustrating.
Thanks for your replies. I have spoke to the dr who still doesnt undertand why and what bloods need to be taken to then speak to the hospital again who are baffled as the bloods o need are to do with methotrexate not lupus. If they read the share care plan which they obviously are its all there what they need to do. Our condition is so hard to get your head round but the lack of knowledge by the gps make you so much more anxious. Lets hope in tbe future maybe more training is given.
Anna, I think you will find that all of us feels this way at some point with our Consutlants and/or GPs at some point in our lupus journey. It's very bad but unfortunately very common. Lupus is a very complicated disease to diagnose and it's called the great mimicker, as the symptoms can be the same for other auto-immune illnesses. That's why the average diagnosis takes 7.5 years but you will find people here who have taken 20 odd years and been very ill before it being diagnosed.
I have struggled with my local care, since my diagnosis in October 2013. I was initially told I had SCLE (an overlap of SLE and DLE) but I knew all along that this didn't feel right. Long story short even after a meeting at my MPs office with two Senior Health Board Officers, to discuss my case and the lack of specialist care in Wales, I was still refused a 2nd opinion and told my care was adequate. So, at the end of my tether, I went to London Bridge Lupus Clinic in April this year and was told that I had SLE. I had been right all along. The local hospital still wont change my care from Dermy led care and last week I found out the Rheumy wont be seeing me again. It's appalling.
I've had other issues too. I changed GP surgery towards the beginning, as the GP there was just awful to me, made me cry in an appt in front of my daughter. I realised early on that he wasn't going to be a good GP for someone with lupus. So I switched surgery. Even there I had a few bad appts with different doctors, but now have found one very good female GP who I request to see. I might have to wait 3 weeks for an appt with her, as she's so popular but it is worth waiting to see her. She gets lupus and she gets me. She doesn't hold back. She's honest and frank, but I like that about her.
Anyway, I was put on MMF last year by a Consultant Dermy, who was great and then he left. But GP does my repeats and does my monthly bloods to check how I am doing on the max dose. They just do the same bloods every month. I don't have any stickers or slips to take with me. They are just hand written by the nurses who do them. She just checks on the computer system what bloods were done the month before and repeats them. I don't even know if I ahve a shared care plan or not, I've never been told.
I think you should make an appt with a good GP there and ask to discuss this shared care plan. See how helpful they are. Face to face, they might be more helpful and understanding. Tell them you need to sort these blood tests out, without further delay. Then, see how they are with you. If helpful and you get it sorted great. If they still show a lack of compassion and understanding and aren't helpful, move GP surgery without delay.
Your health care is paramount in controlling these illnesses and you are too precious to be messed around. Be proactive.
If you think you are going to stay with them, Lupus UK do a very good selection of guides and leaflets. I recently took the Lupus UK Guide to Lupus Diagnosis and Treatment to all GP's surgeries in my area, delivering by hand. If they have up to date information like this available there is really no excuse. (I'm setting up a support group in my county and trying to raise awareness with GPs and Hospitals).
Let me know your thoughts, but I really wouldn't let this drift much longer.
I have heard that the diagnosis for lupus can take years i didnt realise that it was that long... so im very fortunate i was only a matter of months but the pain was unbareable even my notes say i looked like an 80 year old woman. But reading stories like yours i am lucky to get a diagnosis within 6 months. Are you in wales? I live in north wales and theres no support groups up here that ive found. My gp that was dealing with me before my diagnosis must of had an idea of lupus as she done bloods for it so i will take your advice and get an appointment with her see how she is.
Thanks for the information it does you the world of good speaking to people who are going through it. I often think it should be under mental health illness as its so hard to deal with.
I know exactly what you mean. And the depression that comes with lupus sufferers is often misunderstood, in that GPs may think you are depressed because you are living with a chronic illness but it is actually a symptom of the illness itself, not just a reactive thing. I was very ill in 2009 and crying all the time, not coping, my GP just signed me off and I ended up giving up my job as a legal executive at a solicitors, as I felt I was drowning. But if my GP at that time had looked at the wider picture I wasn't just depressed and stressed, I had headaches and sores on my head, was photo-sensitive, losing hair etc. I didn't get diagnosed for another 4 years.
It sounds like your GP might be very swtiched on - if she ordered the lupus bloods on an inkling. Go see her. Talk to her about all this - the bloods etc and I bet she will be helpful. Please let me know how it goes.
And have you contacted Lupus UK about support groups in your area? Might be worth checking. I think there might be a lupus nurse up there somewhere too.
It sounds like your so wise to this illness wendy its actually made me feel a million times better reading all your responses not just to me but other people. Yes i will get myself booked in to see her shes only in my surgery 3 days a week but if shes switched on about it like you say i guess its worth waiting and having that reassurance the person your speaking to understands you in some way. Ive rang my drs and gave them the list of bloods that i need taken so hopefully there will be no more confusion and it will be ready for the end of surgery. I have a brilliant dr in the hospital who i think specailises in lupus i have their direct line for whenever a new symptom appears or i have a question thats very reassuring.
Your hospital care sounds amazing. So that is good. And I think your GP will work with you too, by the sounds of it. I try to see the same GP each time, as it helps not having to repeat yourself over and over. They begin to know you and have the knowldge of your history. My surgery has a policy about seeing the same doctors when you have a chronic illness. Sometimes the Practice Manager at your GP's surgery is knowledgeable about procedures etc too. Good luck. You are at the very beginning. I'm 4 years post diagnosis now. By joining here and posting your questions and concerns, you will gain so much knowledge and always be one step ahead of the game. x
Yeah i tried not to research it at first. I know every lupus case is different and it affects us all in different ways. Am i a bit silly to thunk that when i was diagnosed and put on meds i thought that was it. It hadnt affected any of my organs and the meds and steroids have took the pain away but when i read peoples stories meds dont always keep it at bay and there is still a chance i could suffer in the future with organs. Touch wood that never happens. Im suffering alot with hair loss and mouth ulcers atm i look like ive had lip fillers. Its nice to have a place to talk rather than feel your bothering professionals who you know are very busy its comforting.
This is what bugs me. If a gp has a paitent who has been diagnosed and the gp drs dont have knowledge surely its their duty of care to learn about it and help us understand it. I know they have othet paitents and they are over worked but theyre drs they want to help people so why wouldnt they research. Im on a share care plan so i go between drs and hospital.. i cant fault the hospital so at least i have that.
It is important to remember that it is difficult for GPs to have in-depth knowledge about the many different conditions that they possibly see. As lupus is uncommon it is unlikely that they will have much experience with it, which is why they rely on the knowledge of specialists at hospitals.
You may wish to discuss your care plan with your practice manager to see if any of your concerns can be addressed.
You must bear in mind that changing GPs does not necessarily mean you will find one who is more experienced with lupus.
We offer a free information pack that contains factsheets, guides, a list of helplines and a list of LUPUS UK contacts who you can chat with over the telephone. To download or request our information pack, please click here: lupusuk.org.uk/request-info...
Many years when I was first diagnosed after 10 years of worsening symptoms, the new young rheumy told me he didn't know much about lupus and suggested we learn together!!! He was a very nice man but even then I didn't want to be his guinea pig. I was very lucky in getting my GP's agreement for a referral to St Thomas'.
Fortunately my rheumy did not take umbrage at my "defection" and we all agreed that he would see me on a regular basis whilst being directed by Dr D'Cruz, whose NHS clinics were so full, eventually I only saw him twice yearly.
I know I am very fortunate as although I have now given up being overseen by both since moving away, because the distance is too great, I now have an excellent local rheumy who trained at St Thomas' and knows the drill.
Hang in there, get copies of your clinic appointments and share plan which you can show your GP surgery if they still insist on not knowing what they are doing. Ring the consultant's secretary and ask for blood forms to be sent to you direct. Check with your surgery that they are entering the results to your record and ask about any tests which are out of range. Sorry to say but sometimes you have to be a bit of a nuisance to get things done properly.
Glad to hear you have a good team looking after you. I cant fault the rheumatology department they have given me a direct nurse line if i ever have any questions or wake up with a new symptom. But its just my gp that uneases me. They didnt know what bloods i needed taken or even why i was having them taken even though they had the shared care plan sent over so whats to say they know what results they are looking for. And because in the past they have been telling me my bloods are normal when they werent i dont feel confident that they will give me the correct results. I guess ill just have to trust them and get copies like you say maybe just ring the hospital and relay them just to put my mind at rest. I hate feeling like im moithering all the time though.
Yes my GPS are totally clueless and they don't ever read the letters sent by my consultants , I get copies of the letters sent to gp surgery and sometimes consultants ask them to do tests etc , they never ring me to say your consultant has requested blood tests for example , I leave it a couple of weeks and then ring them and say weeks ago you were asked by my consultant to do ( whatever it was ) why haven't you contacted me . You have to be your own doctor , luckily I have good consultants .
Agreed. I go to rheumatologist with a list of issues. No changes in meds. Nothing. Why even speak. ? Good luck
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