Lupus Site - a guide for lupus patients and their families

Lupus is a difficult disease to diagnose & many patients end up seeing more than one specialist before a diagnosis is made.

You'll often find that you have things you want to ask the doctor, but when you get there you forget. Make a list of symptoms that you are having & of any questions you want to ask the doctor before you go, & take this list with you.

If you don't understand anything the doctor says, or you want something explained, don't be afraid to ask. If you really don't want to ask the doctor, seak to the nurse afterwards.

If you have a GP that doesn't understand lupus, try to educate him/her by giving him/her literature on SLE.

If you find that you aren't getting anywhere with your GP (or specialist), & feel that it's a constant battle to get the treatment you are entitled to, change to another doctor. If the problem is with your GP- is there another doctor in the practice you can see? You don't have to always see the GP you're registered with at that practice. If you still have no luck, change to another surgery. (UK)To do this just go along to the surgery of your choice & tell the receptionist that you want to transfer there. (You can find out the name of a sympathetic doctor in your area by speaking to someone locally who has lupus-find them at a local support group meeting or get in touch with your local contact.) If you have trouble finding a doctor who has room on their list, contact your local Family Health Services Authority, who will have a list of all GPs in your area who have room on their lists.

If the problem is with your specialist- contact Lupus UK, who may be able to recommend a lupus specialist in your area. You may have to travel further afield to find a good lupus specialist though. Explain to your GP about the problems you are having & ask if you can transfer to another specialist.