Good afternoon I just thought I would share this mornings experience as it may be helpful to others.
I had a private consultation with Dr Andrew Barr at the Leeds Nuffield this morning , Consultant Rheumatologist at Leeds NHS teaching hospital.
He was simply outstanding , spent 50 minutes with him he was kind , patient and probing in his questions . He also listened in a very thoughtful way asking many questions about how I was before the onset of my ??PMR and my Prednisolone struggle .
He helped me to see a way forward and I will defiantly consult him again if needed . I know private care isn’t accessible to all but if you have the opportunity to be referred to him then ask for it .
As a side note, and we are all different , I did see Prof Hughes over a year ago and I think he could learn a thing or two from Dr Barr.
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5goFlotilla
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Good to know there is someone good doing private work in Leeds. The best there don't do private work and the only previous option was really NOT to be recommended despite his claims to have published extensively on PMR.
Oh LuckyYou! Why can't all rheumies be like this one? The last one I saw was horrendous and has quite put me off seeing one again....... He is definitely a KEEPER!
I will defiantly consult him again. That typo caused a chuckle. My GP has referred me to a rheumatologist even though I’m managing fine at the moment. I wasn’t enthusiastic thinking I may now have two people to defy instead of just the one.
Only saw Professor Hughes once and I know he is obviously an expert in his field …. far more so than Dr Barr I am sure . He was polite and welcoming but really had very little to say regarding my problems asked almost no questions and referred to my 2 Consultants letters and a few blood tests as War and Peace !
That’s great. Shame he’s not here in the South West. I’ve very little confidence in mine. My recent consultation 5 months after my initial one lasted about 10mins. He doesn’t listen and won’t discuss. Just says what he thinks. Is there any issue in continuing with NHS referral if you go for a private consultation?
"Is there any issue in continuing with NHS referral if you go for a private consultation?"
Is that a general question? No, many people go privately when they are told the waiting list is long. Occasionally the private rheumy is able and willing to add you to their NHS list but that depends on several factors. Some will happily work with your GP to provide services they have control over. Rod Hughes, for example, likes a f2f first appointment but subsequent appointments may be by phone or video call.
Apart from blood tests which get monitored through my GP they don’t seem to want to get involved with any issue/queries relating to vasculitis symptoms or Pred . Just say I need to discuss with my consultant (who is very difficult to get a response from) I saw my local BUPA hospital has a said Vasculitis Specialist but it looks like she is probably my Consultant’s boss in the NHS
I suppose if you saw their boss and explained you need some questions answered as the GP won't and you can't get to speak to your rheumy, it might feed back?
Hi 5goFlotilla. I have been reading your post with a lot of interest. I am glad that you managed to get such a satisfactory consultation with Dr Barr. Without intruding into your privacy, I am just wondering if he has done anything that your GP hasn't already done medication wise? Best wishes to you
Hi Elispeth , well he went through all my GP and Consultant Rheumatologists bloods and clinic notes but more importantly he listened very attentively to me and asked me to try and recount my journey so far . Because I have always had “normal bloods” and never had CRP or ESR taken before I started Prednisolone he was very interested in what took me to the GP in the first place . He absolutely had no magic wand but for example he compared my hand X-rays with my finger Ultra Sound Scan results and explained why in his opinion he didn’t think I had IA of RA which has been suggested .
He talked about how hard it can be to reduce Steroids and as some wise people on here say it can be a bit grim put if you can press on , providing you have no obvious flare issues , you will eventually feel in a much better place . He thinks I am having more of a problem with Steroid Withdrawal than anything else and disagreed , very respectfully 🙂, with the 2 consultants that keep wanting me to take DMARDS
Hi 5goFlotilla. Thank you for taking the time to reply. Your consultant sounds very thorough. I'm glad that he has made you feel so positive again about managing your condition. I think the hardest thing about PMR(for me) is the unpredictability of the condition. It was very interesting to read that he thought that you were having more of a problem with steroid withdrawal than anything else. When I last visited my doctor in the UK she said exactly the same to me too when I said that I was no longer able to swim far due to muscle weakness and also some breathlessness after exercising.
I recently (January) went to a academic health care (USF -Tampa General Hospital). In desperation i reached out to their Rheumatology dept. That very first phone call was amazing, the receptionist listened and told me of cases similar to mine, then she told me exactly how to get on the "urgent" List - (your doctor just has to refer it as urgent).
My first appointment was amazing. sounds just like your experience. I'm not good at expressing myself but the doctor was an expert at probing questions. After almost 4 years of pain (PMR original diagnosis), having every side effect possible from prednisone, depression, and hopelessness, I'm seeing a way through whatever it is I have.
Yes it is going to cost money, but it will be worth it. I have insurance which will help, but the battery of tests was quite impressive, and the bill will be enormous.
As of the first visit, my prednisone was decreased and methotrexate was prescribed. I haven't felt this good in years. She called me the next day to check on me, she has reached out by email several times. It seems like she really wants to figure it out.
It depends - a few people have had bad experiences with big centres. One even was misdiagnosed at Rochester Mayo which was always thought of as being the mecca for PMR - but people retire and move on and over time the focus turns to something else.
From what you are saying though - it may not be PMR but an inflammatory arthritis and the options there are much wider.
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