Im not happy with my Rheumy doc,he's not just doing it for me, I have just recently 2 days before xmas had my usual planned three monthly check up with him and he was running late by 1 and half hours (ok i excepted that and just waited it out with my kindle) luckily for me i was not working that day. still frustrating though,
Then when it came to my turn my Rheumy just sat there and yawned and yawned all through my consultation without apologising for his lack of energy, it made me feel very unimportant and was boring him to tears with my usual complaints.
i really found this upsetting as i have just recently discovered that i have also (without realizing) been suffering with the condition syjogrens for months, and i desperately wanted to talk to him about it and how it will affect my life and whether i needed to now see an eye doctor.
none of these questions got answered as he was too busy yawning and telling me his young child has kept him awake alnight,
i wanted to shout at him, ARE you kidding me! you want to try and live with lupus for just one day and see how you sleep and feel in the morning. we battle with fatigue on a daily basis and we work, have a family to deal with,xmas shopping cooking dinner need i go on
also the nurse kept coming in and asking questions about other patients interrupting me and not apologising or even thanking me for waiting for her to finish.
i wait three months for my appointments so when i go i would like to feel like im being looked after even if the questions i might have are not worrying to them they are to me, and all i want is reassurance and confidence that im being taken care of and nothing is being missed,not boring them to sleep.
I would love a Rheumy that has a personalitiy and i feel comfortable with because lets face it we all need to build a good relationship as we will be needing care for the rest of our lives and trust is so very important
can I go back to my gp and ask to be referred to another hospital out my area? as i really feel quite upset by all this.
yes i could think that this was just a one off but sadly talking to other patients (lets face it i had and hour and half to kill the waiting room was quite busy) he has improved but is still quite difficult to talk to. not good.
Yes, of course you can, this is a stressful enough illness without having to get wound up by your own doctor. The only thing I would say, however, is to do your research before going to your GP, have a couple of names with you. And check that the doctor you want to be referred to is easily available, has many patients with lupus - you can speak to his/her secretary before deciding. Good luck.
thanku purpletop thats a really good idea research and a phone call to the secretary before asking to change i never thought of that.
thats why i love this site everyone is on your side.
Hi pinky that's disgraceful, but the NHS for you ..... we had all this when my 4 yr old was poorly. We user to take Jim along explain everything and he basically told us we were nuts and looking for problems. We eventually went private to be told (we had been told by nhs that utterly looked like Hopkins disease but they're waiting before biopsying him) it was post viral fatigue caused by a prolonged episode of glandular fever. To say we were angry was an understatement.
I have only seen ny rhumie privately and see him under nHS in 10 days and am worrying about it. He is lovely and attentive privately but I guess that is because I am paying £120 an hour to see him, I will report back the I go xxxxx
by default i have a new rheumy. my old one has obviously refused to treat me as i got a seconf opinion from st thomas's who were happy to keep seeing me. but a little too far as the fatigue and pain makes it too far for me to travel.
he is young and new to the job and seems to understand me. i think rheumy's and drs in gemeral need to treat us as individuals and not just shunter us around as non persons
I've had the same experience with the Neuro-Surgical Dept at Addenbrookes in Cambridge for the last 3 yrs. One of the Consultants said "This IS the NHS!!!", as if that is an excuse for their 3rd rate service. Luckily, I have a good Dermatologist (at the West Suffolk). But I had to sack the previous one at another hospital. Yes, do shop around! Never be afraid to do that!
yes i too have a lovely lady dermatologist she explains everything and takes her time i even have a direct number to reach her office and she sees me that day if im worried. (i suffer with allergies) she does NHS and private but i believe she treats us all the same as she has a nice personality. i just wish i could find a rhuemy with the same caring manor.
Sounds like a lot of people have problems with their rhuemies. I thought it was just me!!! My rhuemie was furious with me for getting a second opinion from St Thomas', luckily I did or I may well be dead by now with the seriousness of what was happening. Needless to say I now have a new rhuemie too, fingers crossed he is good.
x
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hi didds82
What is it with Rhuemy docs everyone is entitled to a second opinion i had a terrible time trying to get gps to listen to me and take all my symptoms seriously in the end i had to change docs to even get a blood test done, and like yourself im glad i did because lupus can be so serious for some people. i have over time got better at standing up for myself and telling the professionals im not satisfiled with their view and some take it quite well and some don't. i always now asked them to explain everything but sadly my rhuemy is not very good at doing that.
well, i see my rheumy every three months to check bloods, urine or anything new.
i think thats the norm if your results each time are stable, however im sure if you have some serious problems you will see your rhuemy when necessary and proberly often along with the support of your GP.
at my hospital we have a nurse helpline which i have used and have found them very helpful and sometimes better with advice than my rhumey.
I am in the process of changing my rheumatologist as since my previous(very experienced and knowledgeable) consultant retired 5 years ago I have had extremely poor ,if none- existent, care from his successor, and my condition has worsened considerably.Fortunately I am also under the care of a very understanding and helpful renal consultant who has been filling the gap as it were but it is not fair on him(or me!) to expect him to have the specialist medical knowledge to care for someone with SLE/polyarteritis/vasculitis/microscopic polyangiitis (I've been told I have all these diseases over the last 30+ years but essentially it's the same thing, a rose by any name etc)anyway, after the last debacle of a consultation I decided to ask my renal consultant for a referral to another rheumatologist who I met when she attended to me once whist an in-patient recently and I immediately felt a rapport with her which I never experienced with the other chap, she seemed to understand immediately what my problem was whereas he almost seems to deny there is anything wrong with me, apart from a bit of gout-sorry, but I have had every major symptom that you can have with lupus/vasculitis including renal failure( and a lot more beside due to long term steroid/ immuno-suppression over the past 30 years )and I think I need someone with a bit of understanding looking after me.I won't go into all the ins and outs and bore people here with all the details of the negligence and sheer incompetence I have experienced over the past 30 years not just with this particular rheumatologist but with many in the healthcare profession, but I only wish I'd known as a young girl what I know now and had the confidence and wherewithal to do something about it. I'm afraid now that my quality of life is very poor and is unlikely to improve no matter what I do, but at least with a competent rheumatologist I might be able to stop it getting worse.My renal consultant was quite happy to refer me for a second opinion as he is quite aware of how I feel, there was no problem in asking him, I am just waiting now to see if she (the new rheumatologist) will accept me as a patient.My advice would be to anyone unhappy with their treatment, kick up a fuss, contact your local PALS office via your hospital or GP, tell your GP you want a second opinion, if you don't get on with your GP see another at your practice or even change practice if it's convenient.Just don't put up with rubbish treatment for fear of rocking the boat like I did, at the end of the day, the NHS and its employees are there to provide a service for ill people which WE, and those who have gone before us , have paid for, and if they are not doing the jobs for which they get very well paid then they need shaking up.After all, we only get this one life, there are no second chances.
your story is very touching as it makes me realise that you do only have one life and its important to make the best of it no matter how hard.
feelling sorry for myself won t get me any better treatment but speaking up for myself will, i have proberly found that part quite hard as i don t want to upset the proffesionals.
my husband gets quite frustrated and insists i change my Rheumy he doesn t like him, and finds him rude and your right we have paid for it and they get paid well to care for us private or NHS patients should not make a difference.
good luck with your new rhuemy and i hope she works better for you.
Well said! I patiently wait my turn but then expect to get the treatment I need. Like yourself, I've learned that you should rock the boat if a little turbulence will wake people up a little. Ultimately it should mean better treatment for everyone.
I get to be seen by my rheumathologist anything between 5 - 8 months, depending what my last blood tests are and my symptoms at the appointment. However, at the moment I am going through an unpleasant flare and my appointment is in the middle of March. I would love to see my rheumy sooner, as my gp does not seem to know much about lupus but I am not sure how to do this.
i get to see my rheumy every three months and at the last appointment he said we could leave it for four months but i told him i would like to still keep it at three months as i would like to feel like im being looked after, and to my surprise he said yes thats fine and if i feel unwell or find i suddenly develop new symptoms then to ring his secretary and she can let me know, which is very useful to know because like yourself my GP is lovely but not very knowledgeable about lupus.
im sure if you ring your rheumey secretary she can speak to him/her for an earlier appointment, sometimes as i have learnt that you just have to speak up and be heard, good luck! chin up with that flare ive just had a whole week of badly achy body too,pressure of xmas i think.
Thanks for this. I am monitored in Louise Coote unit and I think it is different there. I remember when I asked about making an appointment they said you have to ask the GP to send them a fax and they will get back to the GP. I am still thinking that maybe my flare will resolve itself without having to go back on steroids or going through the palaver of getting my GP who is not usually very cooperative to contact my rheumatologist.
I gradually had my appointments go from very regular to annual as I was getting much better. I didn't mind because I realised that there were people much worse off than me and I didn't want to take the Consultants' time when others needed it more.
Unfortunately, I ended up being taken off the list at the Louise Coote so now need to go through my GP to get an appointment.
When I was ill last year a Lupus patient (and something of a Lupus expert) I was chatting to said that I really should have a check up with specialists because my symptoms sounded like it could be Lupus related. However, it has been really tough to get my GP to refer me. I wonder if this is a funding issue?
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..... we had all this when my 4 yr old was poorly. We user to take Jim along explain everything and he basically told us we were nuts and looking for problems. We eventually went private to be told (we had been told by nhs that utterly looked like Hopkins disease but they're waiting before biopsying him) it was post viral fatigue caused by a prolonged episode of glandular fever. To say we were angry was an understatement. 
My rheumy steps it up - and free CPD!
Weird advice from rheumy!
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