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Rheumatoid ArthritisArrow
Disease duration 21-25 years
Interview 04  

Interview 04

Age at Interview: 53
Sex: Female
Age at Diagnosis: 30
Background: Housewife, divorced with two children born after RA onset. Symptoms subsided during 1st pregnancy, then got worse and no remission in 2nd pregnancy.
Brief outline:Diagnosed '79 with rapid onset after glandular fever. Various foot surgery undergone and hand surgery planned. Symptom relief from physio/ hydrotherapy & some complementary therapies/diets. Currently Coproxamol, Methotrexate, folic acid & occasional NSAID.


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Patients should be involved in treatment decisions at every stage and continuity of care is important.

 



But what I would ask an expert would be, “Why don't you involve patients in your decision making at every stage? Why don't you ask patients what they want and what they feel they need because the patient is the expert in their own disease?” Because absolutely every patient is a complete individual and there are no two patients that match each other completely. And I think doctors could learn a huge amount by listening more to patients, mmm. 

I find that, quite often problems arise because um there's poor continuity I've had this disease now for 22 plus years and in that time there has been an incredible turnover over all these health professionals, the only one who I remember from back then is, is my then registrar now Prof. of rheumatology so you know he, he was able to act recently upon information that he's accumulated from knowing me all those years, well what better way is there of  serving a patients than by knowing them over a long period of time? And now that has to be true of every health professional now if you see a different occupational therapist every time you go, it's exhausting, exasperating. 

I feel almost like being rude, it's so exasperating to explain to, you know, a 19 year old who's never met me before. But of course it's not her fault. She's just going through things I've seen a hundred times before and they're not telling me anything new, not asking me anything new. Nurses  in hospitals have been sometimes wonderful, sometimes abominable and all stations in between.
Rheumatoid arthritis
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