How do i get my doctor to keep close eye on my condition

I was diganosed in 2009 with lupus now since then i have been to several doctors surgies in my area and it feels like no one cares all i get told is there is no need to do tests however i have noticed i have a butterfly rash appearing on my face i have blocty skin poor circulation in my legs and hands im constantly tired and still im not getting any help or medication anyone help me to get the help i need in 22 and female

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  • Hi hun, R u not seeing a Rheumatologist. Dont know what it is like in your area but you need to ask your GP to refer you to one. Its outrageous that you are not gettng any help

  • i live in southern england not too far from st thomas hosiptal so i have been advised that if i dont get the help and support i nee to phone them and make an appointment with my point is i was diganosed in early 2009 i have a young child and i beleave i have the right to be treated fairly but at the same time i dont wanna make to much of a scene an the doctors just dont seem to give a toss x thank you babe

  • sounds like me aly i was diagnoised feb 2009 i had all ur symptons but i fought hun u have 2 its ur health, firstly you speak to your own dr ,who diagnoised you do you have any letters from hosp/doctors that state you have lupus and which lupus you have, i know its all confusing but noone should be left do deal with this on their own im 43 and its hard enough for me :)

  • i have no idea they orginally said it was lupus anti coagulant aka hughs syndrome but i have more and more symptions pointing to full blown lupus to be honest i feel like im being completely over looked and yes im so scared its unreal thank you for your supportx

  • aly contact your local PALS and tell them all you have said hope they can help you x

  • PALS? sorry am young and nieve i do appoligise x

  • patient and liasion, they deal with complaints, go on and look in ur area for your local one.x

  • Hey Aly

    I totally symphathise with you!! I was diagnosed a good few years ago and had never heard of Lupus. Also like you I have experienced useless G.P's.... to the point of anytime I visited one they would put every and any ailment down to 'Lupus'??? I live close to St Thomas (a 10 min bus ride away) but that doesn't help as they will not see you unless you have a appointment!!!! I went once as a last resort and was turned away!!! And ended up in their hospital (St Thomas)for nearly 3 weeks with nephritis!!! Anyway the best advice I was given was if you do feel very very poorly go to St Thomas A&E and ask them to page their on call Lupus doctor!!! Not ideal I know!!!! If you do manage to find a competent G.P please let me know hun xx

  • i will keep going until i get the treatment and care i deserve as i have pains in my lower back and upper back now as well as stomach pains headaches and horrible fatigue as well as blotchy skin and aches and pain if i have to ill go to lister hospital stevenage and QEII welwyn garden city both a&e if i find my search sucessfull i will endevour to get back onto this page an let you fellow lupus suffers know i hope and pray in the mean time that you all keep well x x x x its comforting to know that im not alone x x

  • I was diagnosed by a renal consultant in 2000 as having SLE and renal failure. I went on to have dialysis in 2005 and a transplant in 2006. I've never had any specialist look after me for Lupus and don't have any meds for it just immune suppressants to stop transplant rejection. I ask my consultant when i think about it to check my Lupus out when i have my routine bloods done. I had one meeting with Prof Hughes on the NHS at Brighton Royal Sussex Hospital who wrote back that i had unremarkable Lupus whatever that means????? I used to be seen by a Opthalmologist for my Scleritis but no longer bother with this. I do not understand the blood tests, what compliments are or what ANA's tell you. I think maybe if i was on my knees then i'd see that i saw a specialist. Lots of people here refer to their rheumatologists (rheumys) but i dont know if they are all having joint problems which i don't, well not until i walked around Rome for 9 1/2 hours in a day then i was achey, or if this generally is the kind of consultant to go to??? Hope you get sorted and cared for soon Aly1989

  • mandam thank you suffer from terrable fatige and with having a 19 month old child just makes it worse im gunna keep pushing as i know in myself my health is seriously becoming affected now so its a case of trying to find a a gp in my area who actually cares an they actually enjoy there job thank you x

  • GP's are useless when it comes to dealing with lupus .... it takes a very specialised person to know what they are doing and to understand the disease. Once diagnosed and under the care of a rheumy the gp's role is merely to write prescriptions and do the obligatory blood tests for the medication. If you are lucky enough to get a gp who spent some time in rheumatology they would have a better understanding of the disease, but it is a rheumy that you need. Take care x

  • This is my biggest problem and i will keep going till i get the treatment ideserve thank you

  • don't give up and don't let anyone fob you off ...... getting the right treatment will give the quality of life that you deserve lots and lots of luck xx

  • hi aly some gp's do care mines excellent and he diagnosed me, try phoning nhs direct for which gp's would be willing to see you and those whos catchment area your in. it must be very hard with a little one but if all else fails do go and sit in A&E until you get seen, i have had to do that before when i had a sever flare.

    GPs still often act as gate keepers and it helps to have a good one even if you have a rheumatologist.

  • I think it's purely luck of the draw whether you manage to find a good GP I'm afraid. I used to have a marvelous GP surgery who would refer me on to whichever specialist I need to see, however, then we moved house to a new health trust area and it's now terrible. It seems to be largely down to funding and separate pots of money that can be allocated. I was hospitalised last year with pericarditis as a complication of my lupus-like condition (they won't call it lupus!) and the cardiologist told me that I needed to see the rheumatologist, however, they were unable to refer me internally in the hospital but I would have to ask the GP to do so once I was discharged. I asked the GP to do this and they said that unless I presented with something new they couldn't do this so I was of course stuck in the middle and haven't seen a rheumatologist for 3 years. It seems to be a system of crisis management only nowadays!

    You say that you have done the rounds of your local surgeries so I would think the only option for you would be to present yourself at your local hospital - this can sometimes be a way of getting into the system even though it seems rather drastic. As some of the others have said, unfortunately most GPs don't understand lupus as it's not at all straightforward. I find it very sad and worrying that our health service seems to be breaking at the seams. Good luck with finding someone who will try to help you!

  • I feel awful reading this poor you its bloody outrageous that you havent been seen to and looked after. Lupus is a horrible condition and to have to cope on your own without support from a specialist is quite beyond my comprehension. I feel very privaleged to have received the care I have done, I clearly have been one of the lucky ones. I really hope you get this sorted, sounds like you really need to start screaming and shouting at someone :/ I wish i could help you in some way - good luck, keep at it till you get what you deserve. :)

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