hospital appointments: hi everyone, just wanted to... - LUPUS UK


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hospital appointments


hi everyone,

just wanted to vent my anger and frustration as my last lupus apt was in march, since then ive had a nasty long flare which started march and is only just easing now. my hospital used to give me my next apt date after seeing my specialist at reception but now a new system has begun where they post a apt 6 weeks before its due.

well, its September and I thought my apt must be due soon as been 6 months,letter came today for 14th JANUARY 2014!!!!!!! are they having a laugh,ive had to cope with this flare on my own as my gp couldn't help me and said wait til I see my specialist!

o crickey, im so fed up of chasing my own tail. sorry to dump this on you guys :(

a very fed up grumpy growly caninecrazy x

9 Replies

just re-read my blog,i sound very ungrateful. im not honestly. (an embarised caninecrazy x)

Go to the hospital, show how ill you are and how upset, ask to be seen earlier, make it impossible to be refused (I don't mean shout, just being there face to face and insisting would help). Ask for the reason for the appointment being moved, push, push, push.

Oh hun I was in the same boat as you but I constantly called the rheumy nurse and told her everything she got me an emergency appointment to see the doctor today. Call the nurse she should be able to help you x

hi canine crazy you dnt sound ungrateful,many of us have this trouble with appointments and it isn't fair,your gp can contact your hospital and request for you to be seen or like anniekhan said if you have a lupus nurse ring her,never give up,you are just as important as any other patient,take charge of your own wellbeing and health,none of us want to go to hospital we have to due to this awful illness,

good luck xx

Hi there, I was in a similar situation about 6 months ago. I was having a bad flare, was supposed to see the consultant every 3 months but my appointment got cancelled twice, so it was nine months before I saw him. Like you my gp always told me he couldn't help as my consultant must have a plan.

By the time I got to see my consultant he was shocked at the state of my health and chewed my ear for not consulting my rheumy nurse to get urgent advise. He was fab, and has been seeing me every 6 weeks since.

Ring your rheumy nurse today, I wish I hadn't of waited for my appointment.

Good luck

Hi Cainine, i too am same as you. Been having a flare up since March and had no idea it was Sle. Saw Rheumy in the feb and had blood tests in the June with lupus nurse and confirmed a bag of mixture of everything and mild Sle. My rheumy appts got cancelled 3 times over the summer. I emailed my lupus nurse to explain i was getting worse. My dr always say there is nothing much we can do the the door is open at the Rheumatology they are the ones looking after you! Anyway cut story short i manage to see my consultant several weeks ago and now he has put me on Prednisone till end of Nov. Where i have another appt. My advise is ring the rheumy dept and speak to your specislist nurse.The hospital cancelations was due to staffing having their summer holidays. Yours could be the same! But do contact Rheumy and your practioner nurse in the rheumy dept. They also have a direct telephone line if anything is urgent. I had to because my flare ups wss so bad it affected me mentally and caused severe asthma attacks which my asthma nurse was fantastic. I still see her every two weeks now. Pred is helping. Good luck and let us know how you get on.

Hi I totally understand your anger and frustration, either phone the clinic directly or the consultant's secretary and express the urgency of having the appointment brought forward if your flare is terribly aggressive so that you can't stand the pain and life is really unbearable and you are getting no joy from anybody take yourself to A&E. I did this and got admitted and was seen very quickly as there is such a big risk of infection to anyone in an active lupus flare and got admitted to a ward then was seen by a consultant from the lupus team very quickly. Things moved very quickly from then my treatment was changed as they could see what my symptoms were like day to day and I now lead a full and active life thanks to another lupie suggesting this to me.

Good luck I sincerely hope you get sorted out quickly and your flare gets treated successfully

Madmagz x

quick update; phoned lupus nurse Friday and left message, then today too and left message just waiting for return call. saw gp Friday as my med review is due and she couldn't be less interested; stating I should wait to see my rhuemmy as they must stick to their care plan. I asked to have my blood pressure taken and she said no need as ok last time (feb) I also asked again about flu jab,she checked their list and said lupus doesn't qualify for free jab to find a chemist who gives jabs and pay!!! basically im on my own yet again :( x

If you phone the gp and book an appointment with the nurse the nurse at the gp surgery will give you a free flu jab. In the gp surgery the jab is free for everyone. If that does not work go to the hospital and say I really don't feel well and need to see my rhematologist it's urgent. You will get be given an emergency appointment. When I was not feeling well I had to do the same thing.

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