I had a great GP who learnt all about my problems. Acted promptly to referal reauest from Clnsultants & acted immediately to prescription chsnges etc. Also his Surgery Manager & her team are fantastic. However due to tragic circumztances his LOCUM took over.
But as the practice staff have been so good & I have been in various Flares followed quite rapidly bh another one I have not found a new GP.
Now it is essential. This X Locum ignores referal request from Consultants (4 letters in 1 instance so far), ignores instructions for monthly Vitamin injections. My Vit D levil was 10> since 2008-Nov 2011. I have had only 1 injection & my vit d levil as of Oct 2012 is still 24<.
With the new benefit changes I despertely need to find a supportive GP.
I am currently in Flare, suicidal & have Discoid Lupus breakout all over my arms & legs.
This letter & phone call that you are instructed to make (which is the first verbal interview), is getting close to being the straw that breaks the camels back.
Sorry to be a whimp again. But I had to go back to London on the 30th for an urgent scan. THEN BACK AGAIN ON 31 for an Ultrasound. Having been at the Lupus Centre on the 16th.
My Follow-Up Appt for 3 months was changed by Prof'D'Cruz until April 24th. I have spoken with the consultant I saw who only works 1 tuesday a month & she said she asked to have the appt put back ti the original 3 months....but no joy. Went to the Unit while in London & apart from obtaining blood results no one could see me. I have bleeding, pussy open discoid sores all over me & my nightdress was badly stained from the journey up. I did manage to get some additional bloods taken that were previously highlighted in April this year as being outside normal limits instigated by one of the nurses as the Consultant I saw on the 16th Oct had not requested them.
POSITIVE NOTE : SINCE OCTOBER 16th when there were no leaflett's on Hughes Syndrome or Lupus. THERE ARE NOW LEAFLETS AGAIN ON LUPUS.
please help.
Written by
fiona734
To view profiles and participate in discussions please or .
Gosh Fiona you do sound like you are having real problems. If your skin is in a really bad condition and you are unable to get treatment perhaps you could visit A&E, or at our hospital we also have an out of hours GP service which may be able to go to.
If you feel able try to get another GP, ask friends if they can recommend one.
You say you feel suicidal please don't suffer alone you could contact the Samaritans for advice maybe your local social services could help. I would also suggest you contact the citizens advice bureau for help with benefits issues, they are very good at form filling and often send an advocate with you to tribunals.
Take care and keep coming on here to let off steam.
sorry about the problems your having and i hope that you get sorted and the help you need . have you a carers service in your area they have a somebody that will come out and fill in your forms with you .ive got to fill a form for the new benefits and they are really good and will help you not just with the forms but with anything you need care and help with .you are not alone theres always someone here to help or talk to about anything . takecare xxx
Hi Fiona, I can only say try the benefit agencies for advice concerning benefits as we could tell you what maybe we could get but it may be different for you? I dont want to put hopes up or anything.....best to contact them yourself.
Here is a link to some surgeries in that area, I wish I could help more....but I am not from that area so dont know if their any good & know about Hughes Syndrome well?
I know I am unable to change docs in my area...we have a 'code' that you have to stick to the docs your in? I dont know if it's different else where?
If you wanted me to phone them for you I could do.....but they may want to talk to you for personal reasons anyway? would your carer look into the links here to perhaps try for you?
THANK YOU ALL SO MUCH FOR THE SUPPORT & ESPECIALLY THE LINKS TO CHECK OUT NEW GP'S.
SINCE MY OCTOBER 16TH APPT AT TOMMY'S I HAD THE URGENT BONE DENSITY SCAN DONE LAST WEDNESDAY AT GUYS & THE RENAL ULTRASOUND SCAN AT GUYS LAST FHURSDAY. AS SUGGESTED I CALLED INTO THE LUPUS UNIT @ TOMMY'S. I MANAGED TO GET A COPY OF MY BLOOD RESULTS FROM THE 16TH & STILL VIT D 20<. ALSO NOTICED THAT 4 HIGHTLIGHTED TESTS DONE IN APRIL (MEANING OUT OF NORMAL LIMITS) HAD NOT BEEN REQUESTED FOR THE OCTOBER 16 TEST. MANAGED TO GET A NURSE TO PRINT OFF THE REQUESTS FOR THOSE TESTS TO BE DONE. SO ALWAYS ASK FOR THE FULL PRINT OUT OF TESTS & KEEP IF ANY RESULTS ARE HIGHLIGHTED SO THAT YOU CAN FOLLOW UP. ONLY 1 DOCTOR ALL DAY & WOULD NOT SEE ME. GAVE MY MOBILE # INCASE THERE WAS A CANCELATION WEDNESDAY OR THURSDAY & CALLED EACH DAY. NO LUCK WITH SEEING A DR. ALSO FOUND OUT THAT THE DR I SAW ON THE 16TH OCTOBER ONLY WORKS 1 DAY A MONTH & THAT PROF D'CRUZ IS THE PERSON WHO PUT MY FOLLOW-UP APPT BACK FROM 3 MONTHS TO SIX.
VERY GLAD TO SEE LEAFLETS RE LUPUS ALL AROUND THE RECEPTION AREA. AM SURE THAT IN THE PATIENT AREA THE ONES RELATING TO HUGHES SYNDROME ARE BACK UP. (FINGERS CROSSED).DID GO TO PALS AS WELL REGARDING THE FACT THAT
NO ONE HAD PICKED UP ON MY VITAMIN D DEFICIENCY FROM NOVEMBER 2008 - APRIL. 2011. TURNS OUT IT WAS INVESTIGATED & CLOSED BY PALS HAVING BEEN PASSED TO THE SERVICE DELIVERY MANAGER IN JULY. A RESPONSE IN WRITING SHOULD HAVE BEEN SENT TO ME IMMEDIATELY. AS THIS DID NOT HAPPEN. PALS HAVE REOPENED THE CASE &THE LUPUS UNIT SERVICE DELIVERY MANAGER HAS TO RESPOND AS PER THIER AGREEMENT WITH PALS BY NOVEMBER 2012. PALSOF TRUST FUNDS SUGGESTED I MAKE A FORMAL COMPLAINT TO THE PCT. THAT IS A WASTE OF TRUST FUNDS, CONSULTANTS TIME ETC.
I UNDERSTOOD PALS WAS DESIGNED TO HELP RESOLVE PROBLEMS NOT HELP SET FIRES.
I AM SO EXHAUSTED. SCARED AS I HAVE HAD 2 MORE FITS THAT I HAVE NO RECOLECTION OF & WITH THE BENEFIT REVIEW I NEED TGE SUPPORT OF THE LUPUS UNIT - NOT TO BE IN CONFLICT. I KNOW THAT I MAY WELL HAVE SUFFERED IRREVERSABLE DAMAGE FRIM THE LACK OF VITAMJN D FOR SO LONG. BUT WITHOUT THE MEAGRE AMOUNT OF MONEY I HAVE TO LIVE ON I DON'T THINK IT WOULD BE WISE TO BE REPORTING THE LUPUS UNIT TO THE PCT. DO YOU GUYS ??
I FEEL, BUT HAVE NK EVIDENCE THAT THE PROBLEMS I HAVE ENCOUNTERED MAY BE DUE TO STAFF TURNOVERS AT 6 MONTH ROTATION. SO NO CONTINUITY. I ALWAYS TRY TO GO TO APPTS WITH A COMPLETE DRUG LIST. UP-TO DATE MEDICAL HISTORY.
RELEVANT TEST RESULTS. (I AM NOW INCLUDING MATERNAL MEDICAL HJSTKRY)
ALL BOUND WITH AN INDEX & AT LEAST 2 COPIES TO LEAVE WITH THE DR I SEE.
I AM GOING TO WRITE NEXT TO PROFESSOR D'CRUZ, INCLUDE I PACK AND VIRTUALLY BEG FOR HIS HELP. NB. IT WAS NOT ME WHO STARTED THE OALS ENQUIRY BUT THE DR I SAW FROM THE LUPUS UNIT IN APRIL (HE NO LONGER WORKS THERE).
WILL LET YOU KNOW HOW THINGS PRICEED & AGAIN TY ALL SO MUCH FOR SUPPORT & IDEAS.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Constant Pain in right thigh/hip.
Confused after first Haematology Consultant Appointment, please Help
GP reluctant to refer.
Lupus anticoagulant test
Heart Broken...Now what
