Should I complain

[hebdengirl]

I have had 2 separate unprovoked blood clots. Last year I had pulmonary embolisms and terrible pleurisy and a positive lupus anticoagulant test. The consultant I saw (physician) was dismissive of test and said treatment was warfarin and no point repeating LA test as now on warfare. He said my pleurisy was due to PE and would clear. He discharged me

As a result of my own research and support from this site I pushed my GP to repeat test and refer me to rheumatology. They subsequently diagnosed me with antiphospholipid syndrome and SLE. Should I make a complaint about initial consultant physician who was so dismissive...I could have stared the lupus treatment a year earlier and avoided further flare ups.

[MaryF Administrator]

You could make an educational complaint, this is what I called mine years ago. I delivered lots of the relevant books written by Prof G Hughes, and also some films and a medical paper or two, and explained how I hate making formal complaints as they are so bad for everybody. This did the trick and helped the care not only for myself but for my children. I also filled in NHS choices and gave very detailed feedback, some very positive and some highlighting grave areas of concern. MaryF

[hebdengirl in reply to MaryF]

That's a good idea..thanks mary

[Lure2]

First of all, if i were you, I would make certain that you have now got a Rheumatologist who is not only a Rheumatologist like all the others, but a Specialist of APS and who then also knows about SLE no doubt.

There are very few Doctors that know APS (not even the Rheumatologists) that is why it is so very important to have a Specialist.

I have primary APS (not SLE etc) and LA and Pulmonary Hypertension. See to it that the bloodpressure is kept normal.

Best wishes from Kerstin in Stockholm

[jetjetjet]

I agree with my friends here Hebden- I have had issues with some Dr's and have done just as advised and also sent paperwork to them afterwards-- But one wrote a letter that went on my record and i gave him a letter telling him of my dis approval and gave him opportunity to retract of which he refused so i went to patient affairs at that hospital and raised a complaint that went in front of the hospital board they ok'ed a addendum that was to be put at the BEGGING of that report .

As in this country a DR's report is a legal binding document and can only be altered by that dr. and there is a time limit. So i thought i would share this as i have 25 Dr's that i see - some only as needed and others on a timely basis. most all specialists. I live in New Hampshire USA . here for you if you have any questions of what i did ---Casey and I

[Ozchick in reply to jetjetjet]

25 Doctors!! I'm glad to have only 3 that I need to see on a regular basis. The first Haematologist was very dismissive of the first PE's that I had, that really started the ball rolling with my diagnosis through a number of other specialists. The current one I have works out of the same hospital and I didn't bother to report the first one because I was seeing so many other Specialists, I was exhausted revolving my life around appointments-not to mention the $$$.(All being -ve for my many and varied symptoms) before the circle came back to current Rheumy and Haematologist. (These are both fabulous)

[jetjetjet in reply to Ozchick]

It's great to find some that will work and listen.- i have so many because of my Rheumy inNov 2 2011,

He would listen and when i brought some thing to him and i had relevance, he would do it {as a matter of fact I don't think there was a one he didn't do referrals or tests that i asked for} and he would talk to the other DR.'s and i always go back to them same ones for testing ,consulting ETC. This is why i have so many active Dr.'s He even would work with me if i was sent to a DR. that wasn't doing any thing !! he did my referal to Pain Care and worked directly with my 2 new DR.'s there. This was a HUGE step for me. OZ i have a lot of Dia. medical problems and getting and trying to keep them some times is impossible . But what are we to do .

[Puska]

I saw a Rheumatologist who even argued I had a DVT (in my jugular vein) despite ultrasound and radiologist and haematologist confirmation and told me to stop taking anti-coagulants. He did not order any further tests. I decided he was an idiot and kept taking them. I was then referred to a Rheumatologist who was much younger, has written many scientific papers, and had me do more tests which found I was strongly Lupus Anticoagulant positive. Had I taken the first 'specialist' advice, goodness knows what might have happened. I wrote him a letter detailing my frustrations to the first Doctor but still wonder if I should make a formal complaint. The first visit was in May this year from a DVT in February.

[Lure2 in reply to Puska]

You can be glad that you found out that Rheumatologist was an "idiot". Those Doctors (there are a lot of them out there in all countries) are lifedangereous.

Best wishes from Kerstin in Stockholm