Has anyone had trouble seeing their Rheumatologist since the first Lockdown?
I see a Rheumatologist at Addenbrookes and have done for 7 years. After developing new symptoms I was placed under the care of the Lupus nurse and had 2 telephone consults in late 2020 and early 2021. I also had a telephone consult in August 2021 with my Rheumatologist as well. A face-to-face appointment was booked for August 2022 but it never happened; I have chased it up twice only to be told I am 'on the list but am listed as 'not important' and will have to wait until I'm contacted. It seems that unless I became extremely unwell and see my GP, nothing will change.
I have a diagnosis of UCTD that is either treated as Lupus or UCTD - I have many letters from my Rheumatologist where he oscillates between the two! I have only been prescribed Hydroxychloroquine and Prednisolone to date.
Apologies to come on here and rant - I just thought there may be someone with 'proper Lupus' who could help or advise me. I had Covid 5 weeks ago and I am still unwell with a throat and chest infection now. I have been refused antibiotics and didn't qualify for IV antivirals but have had 4 Covid jabs and a Flu jab though.
Thanks for letting me moan! 😞
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Ali_B
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Hi. I've had both phone and f2f appointments no problem. I had 3 last year after having several lung flares.ring up the secretary and tell her you are struggling and need to be seen....that's what I do. You need to shout.hope you feel better soon .kind regards for 2023. Xxx
I think you are right about shouting; after numerous attempts via email, MyChart and telephone calls I ran out of steam. I've now had 5 weeks of illness after catching Covid and have been 'trying to get on with it'. I work full time and the thought of returning more unwell than when I finished for Christmas doesn't fill me with cheer.
I totally get the run out of steam. I can be the opposite sometimes and it makes me more determined .doesn't matter what you have if you are struggling you should still be able to access help. Gp's arnt much good with AI illnesses I'm afraid ....its too complex. Sending you healing hugs xxxx
Who said Ive had no problems ? I know I am very fortunate to have the mdt I have now but for 5 years I fought arrogant and ignorant drs who told me nothing was wrong when I was in hospital with right base atelectasis and left side pneumonia. I stood up to them ,told them they were incompetent and refused to see them.as a result I was sent to the chest specialist at the royal Preston and the North West lung centre where a professor of respiratory said it was AI.the rest as they say is history.they also know I won't be fobbed off. so there you have it betty 909090909090 over the years ive had to stand up and shout and take alot of crap along the way.!!!! I know people are let down on a daily basis and I feel for them .I've had to fight damn hard so don't jump to conclusions and assume I've had it easy because I haven't.
Thanks for expressing your anger and the explanation !☝️👆👍👏
Trust all is well with your current treatment and you’re living life as optimally possible despite your complex AI conditions but unfortunately the current U.K. NHS system (for diagnosis, referral and treatment) seems to be in meltdown with no respite ahead for many.
Congratulations on winning your past personal battles with ignorant and arrogant doctors. 👏👍
Unfortunately many on here (perhaps the majority) do not have referrals to specialist professors ? So there one goes!😰
Many on here including myself feel justifiably abandoned, neglected, angry, depressed, anxious and overwhelmingly tired with the lack of medical treatment and waiting to get one! Perhaps it’ll get even worse!😰😱
I am one such person who has been neglected, abandoned for three years without an actual face to face appointment, however I do not see others receiving appropriate, timely treatment as a source of threat or need to be rude, disrespectful and snide. There is absolutely NO justification for your unkind response and I think you owe SML an apology and yes before you point it out I am angry. This is a safe space, a mutually supportive space and not a space for ill judged sarcasm and spite.
Hello! Sorry to hear your troubles with getting the support you need. I have had telephony and f2f appointments throughout 2020-present. Is there a rheumatology or general patient helpline you can contact? I have found this helpful as the nurses are able to offer immediate advice and also flag to consultants if/when needed incl. arranging f2f appointments or enabling advice from consultants via phone or letter. All the best.
I was in so much pain during covid, I finally had a telephone appointment with my GP, after 10 minutes he told me I had to come to the surgery for a f2f. I have MCTD. After examining me, he referred me urgently to see my rheumatologist, he told me did some training with her. It was a few weeks later I was seen at a Hot Clinic, she told me she thought it was lupus now and referred me to dermatology and also I had to see my own consultant. Now 6 weeks later I finally saw her, had steroid injections which didn’t work then had to go on oral steroids. That was my tale of woe on how to actually see my rheumatologist, I’ve since had a telephone consultation and next appointment is May with a f2f with her. Wishing you the best, try your GP.
that made me smile ‘proper lupus’. Yes I have lupus as well as other ones thrown into the mix and yes it’s a struggle to see any consultants in colchester general. I’ve not seen the rheumatologist since 2019, have had yearly phone calls after I’ve chased him and every time he says next appt must be ftf. As far as I’m aware we don’t have a lupus nurse. Gastro consultant, yearly phone call, now has gone to next appt in 2 yrs.
My daughter is under same rheumatologist, she hasn’t spoken to him in over 1.5 yrs has a problem with joints that’s getting worse. GP wrote a letter (nov) to say she needs to see consultant urgently and she had a letter, next appt March which is telephone appt.
You are definitely not alone in being ‘ignored’. All you can do is make a nuisance of yourself, but here’s the catch 22 you need to be well enough to fight them, half the time we give up because we’re too exhausted to keep hanging on the phone.
Sorry for no advice, this is where the forum helps, a place to rant where people understand. Hope you start to feel better soon 💐
I tempted fate by putting 'proper lupus' but in honesty it's actually a reflection of how I've been treated in the past. All GPs I have seen have pointedly told me 'you haven't been diagnosed with Lupus' when I mention my illness. It's a real sticking point that annoys me because UCTD is no walk in the park either! You are so right about being well enough to fight - I'm drained by it all.
I had my diagnosis of lupus by having a bout of pancreatitis that they couldn’t find a reason for. I remember the consultant wanting to send me home and treat me as an outpatient but I told him I wasn’t going anywhere until they came up with an answer and I didn’t care I was ‘bedblocking’ it was one of his students who said i’ll keep going until I find the answer and she did! Before the lupus diagnosis, for many years of going from GP to various consultants, I was continuously told it was all in my head and anxiety. As you say UCTD, MCTD, fibromyalgia are all conditions that are very similar to lupus and cause exactly the same pain, brain fog etc and should be given the same attention.
Mine are all over the phone as are my Cardiology appointments. I did see a rheumatologist privately in desperation at the end of 2021 and got myself a steroid injection at an exorbitant cost.
Apart from when having hospital procedures for gall bladder and eye surgery, I haven’t had basic blood pressure, urine checks, heart murmur checks etc done by a professional for years.
Annual medicine reviews by the GP are all over the phone and on the last one I had to tell the GP why he was phoning me.
Yes, I think we all have good reason to feel neglected!
I no longer have a named GP and when I've had a telephone appointment they have no idea about my medical history - it's beyond a joke. I too am under a Cardiologist and haematologist and have managed telephone follow-ups but only by chasing them.
the lupus nurse at Addenbrookes is wonderful. See if you can ring her and ask her advice and say you are struggling. She is very knowledgeable and kind and you never know she might also be able to get you an appointment. Also if you join Mychart you can message using that. Good luck and take care
I'm under her care and have spoken to her before; as you say she is wonderful. I'm also on MyChart and had sent many messages last year about my appointment but alas no reply. That's when I ended up phoning my consult's secretary and his clinic, only to be told I was classed as 'not important'. I'll try the nurse again and hope I can get hold of her.
I had my first face to face with my rheumy last November, first for 3 years due to covid, but she rang me every 4 months for at least half an hour chat through out it all xx
Hi Ali Sorry to hear you are having so much trouble at Addenbrookes . The only suggestion beyond that already suggested is you may wish to lodge a complaint via the PALs (Patient Liaison Team) that may be worth a try -- emphasising that your condition is getting much worse.
Re your ongoing infection please be careful re antibiotics as the last Lupus magazine had two reminders showing the antibiotics that lupus patients and those using hydroxychloroquine should not be using. Please check.
Hope this helps --just a little. All the best for the new year.
After all your advice and support, I put on my big girl pants and decided to do some much-needed shouting (thank you Spanielmadlady). I managed to shout/speak to a GP who not only prescribed antibiotics but also asked why I hadn't had any communication with my Rheumatologist for nearly 2 years. He said he would email my Rheumatologist and asked me to also phone the Lupus nurse. I then phoned her and left a message explaining that the GP I had spoken to wanted to know why I hadn't been seen (or spoken to) and if could she arrange for full bloods to be taken. I received a phone call back from her less than 2 hours later! My Rheumatologist had graded his patients according to priority with 1 being the highest and 4 being the lowest. I was graded at 4 and as the clinic admin had told me 'I wasn't important'.😒
In 2 weeks' time, I am off to hang my arm out of the car window in a cold windy car park in Newmarket as they take my bloods. I doubt I will get a face-to-face appointment after my results are back but I'm hoping for a phone call at least.
I just wanted to thank all of you that responded and gave me your time and advice. I have been lurking on this forum for a while but had never posted until I was at my wit's end. I also apologise for bulldozing onto the forum and not even saying hello! Next time, I will remember my manners! xx
I agree with you, the patient too often has to work very hard to get any kind of service be it appointment or tests and results. It is frustrating having no option but to get hospital test results and notes via patient access request, then to interpret them via Google because you cannot get a follow up appointment. Last year I saw a consultant privately and send her detailed report to the NHS doctor. That shamed them into the nescessary action!
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