Hi everyone ,
I’m just wondering if anyone is under the same group of consultants has me , as I do worry at times about notes been written up and diagnosis been missed off . Or even not acknowledged conversations had and symptoms been missed off the write ups .
Does anyone else have any concerns ?
Anyone in particular? That is the department Sarah Mackie works in and she is superb.
One way to deal with it is to take someone with you to make notes or even to record the consultation on your phone (if you have one), explaining you would like to listen to what was said again as you struggle to remember and want to be sure you have it right. That often concentrates the mind on their part.
Hi , thank you for your reply , not heard of Sarah Mackie .
Will look out for that name up on the board on my next appointment .
I just worry that important information is missed out , and anyone viewing this does not get a full picture .
She was off sick for some months.
Do you get copies of your letters sent to you? You are entitled to.
Yes I do manage to get my consultation reports . I always request them , but still have to ring up several weeks later to request them again . That’s what worry’s me , past diagnosis missed off and things discussed ie symptoms missed off consultation notes .
Seems steroid injection answer is given to everything . I would like further investigation / diagnosis . Other than heres a steroid injection . Has of now I’ve had one in my knee with little effect .
I Do take hydroxicloriquin 20 mg daily .
I have a problem with my wrist at the moment swelling , stiff and have several lumps on the inside , not gangions .
I worry it’s something that needs further investigation , and I’m offered a steroid injection .
If I were you I would speak to the GP and explain your concerns about the wrist. They can request at least an x-ray and possibly an MRI (don't know enough about the system these days) to try and rule out the possibility of inflammatory arthritis causing that. They can only say yes/no!
Yes , I will make an appointment . I think I will be bounced back to rheumatology though . Thank you for the advice x
Hi Willow I attend Chapel Allerton and fine them a good group. I feel very lucky to be under Ed Vital who is incredibly knowledgeable and really keen to listen to concerns and symptoms. I have also been on a number of trials with then
That is when I have encountered some outstanding treatment and care, but not quite supported with lupus knowledge. When Mr Vital isn't at my appointment (quite often as he is so busy) I often feel that me and Drs / nurses are discovering lupus together. In summary though I feel incredibly lucky to live near and have access to such a department.
Hi Willow1414, I am also seen at Chapel Allerton. I have had to phone and chase up every 3 month appointment I've had there, they always seem to have a 6 month backlog. I have to say at the appointments I feel very well listened to and given plenty of time to explain symptoms/ask questions etc... however I do seem to see someone different every time. At my last appointment in February I was offered a steroid injection and told if this worked then immunosuppression would be considered next. I was also told I would be part of a Lupus/PBC study but this has never come to light and also have never had a nail fold capillary test as I was told last year. My last write up letter had the wrong information on it regarding medication and not much detail about what was discussed at the consultation. I have mixed feelings about the care although I do feel they are in high demand and see a lot of patients and I'm grateful I am seen there as my local Rheumatologist seemed at a loss with my various auto antibodies and symptoms. I'm hoping I get there eventually with treatment, I have an appointment on 6th June and I have some new symptoms to mention, I too wonder if these will be investigated further? My GP also now refers everything back to Leeds!
Wishing you all the best 😊
Hi Happy 43
Thank you for your reply , yes I also have seen a different consultant each visit . Also, they miss off my medication on the write up letter sometimes .
Expect they are a bit overrun at times , I do feel that more tests should be done and not having to research things and request what I feel should be necessary tests .
I had been complaining about my dry eyes for quite a few visits , I requested a paper in the eye test , turned out I don’t produce any tears in one eye and minimal in the other , that’s when sjowgrens was added to my list of autoimmune conditions . I don’t feel like it should be me who does the homework .
I would like to be referred to an eye specialist , has I feel I need to protect my eyes with some kind of fitted eyewear .
I’ve tried buying online . Not yet found a pair to fit properly . Hope I can be referred next visit .
My wrist is swollen and has been since before Christmas . Offer was steroid injection . I do wish proper diagnosis would be made , just to ease my unease about maybe it’s something that needs further investigation has I have several lumps , not ganglions . NOT even mentioned on the write up notes , just a bit disappointed at times, with the long journey , one thing after the other , and waiting soooo long to get treated for each problem . I requested a USC of my wrist . This was agreed has they where not sure if it was sinovits . Appointment never came , I had to phone up . Then it was ordered , I’ve waited 9 weeks , then just a few days before my scan , my appointment was cancelled ,rescheduled another 5 weeks .
My wrist is very weak and first finger tip is numb . Just feeling a bit sorry for myself .
I know what you mean about mentioning things more than once, I'm there next week and I'll be bringing up some things I told them last time. I too hope they might arrange some tests to find out what's causing them 🤞. I'm constantly trying to research my condition, no one has ever explained it to me, most of what I know is from Google and the lovely people on here. I hope you do manage to get some more tests and help for your eyes and wrists, I know it's a long wait between appointments which is frustrating when we need answers to questions and GP's aren't able to help.
Good luck 😊
I attend Chapel Allerton and I’m happy enough with it. My main complaint is not being copied in on letters, although I specifically ask to be.
After my first tests of bloods etc I was sent for a raft of tests of my lung and heart function, and, more recently, took part in a research study which has resulted in finding I have early Sjögren’s, too. The last letter ( sent to my GP only, of course) had three detailed pages.
I’m supposed to get an appt with the CTD renal clinic, but have heard nothing yet.
The only problem I had there was they somehow muddled me up with osteo. I was given a couple of injections and I didn’t hear again until my new GP who got me an appt very quickly.
The place is very busy.
Hi lupiknits
Thank you for your reply .
Yes it is very busy at times . I had to have an urgent appointment on my last visit . Was on a Saturday . Very quiet .
I usually attend on a Thursday .
Told Saturday was just because they were behind with appointments .
X
Interesting. I had the impression at one time that there was some sort of observation going on, and the waiting list improved a bit after that.
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