You may be the only vasculitis patient on your GP list. Where possible you should arrange to see the same doctor at each visit to ensure continuity of treatment and advice given.
Many vasculitis consultants advise patients to contact them (via their specialist nurse, secretary or clinic) regarding new symptoms and problems encountered as a result of changes in medication.
As you become more educated in the disease process you will understand what is normal in your particular case. However, it is often difficult to detect whether any change in condition is due to the onset of a flare or relapse, or whether it may be attributable to a simple infection. Consultation is advisable under these circumstances.
Hospital Consultations: As part of the consultation process, the physician will discuss the findings and ask general questions. It is important to take a written note, as an aide memoire, of matters which need to be brought to the attention of the physician. Where you do not understand any aspect of what the doctor has said then clarification should be sought. Taking a family member or friend (an advocate) into the consultation can be very helpful in enabling you to recall any important instructions given. Many patients find it useful to keep a diary of main events, symptoms and other key aspects of their vasculitis – referring to past entries can help prepare a written note for the consultation. It also serves to show that progress is being made.
Patients may not wish to mention a particular problem they may be encountering mistakenly thinking it is of no importance or they fear that the medication or treatment regime may be increased or changed. The physician requires the full facts in order to provide appropriate care.
Changes to treatment regimes are not made solely on test results. The physician will consider, amongst other things, recent blood, urine and other laboratory tests, what they find examining the patient and the history given. Blood tests are only a tool and a guide for the physician. For example, a negative ANCA test does not automatically mean the disease is quiet, whereas a positive ANCA does not automatically mean the patient is not responding to treatment.
When seeing the doctor you should never be afraid to ask any questions regarding your disease, possible symptoms or treatment. The doctor should be happy to discuss any changes to treatment to enable you to make an informed decision and to reach agreement with you about what is appropriate in the individual case. Where you are not happy with the explanations given, suggested treatment or changes in treatment you should not be afraid to say so and ask for clarification.
If you are seriously dissatisfied with the treatment received you should discuss this with the consultant. If you are still dissatisfied you should ask your GP to refer you to another consultant/hospital. Under current NHS regulations regarding “Patient Choice” patients are entitled to be referred for a second opinion to a consultant or hospital of their choice. The request to be seen by another consultant cannot be over-ruled by the consultant concerned. If the GP does not co-operate the patient should ask for a written letter explaining why the request has been declined.