Hi all,
I am from East Yorkshire and am looking for a new NHS rheumatologist. I am prepared to travel.
I am currently considering Dr Paul Emery at Leeds or the Kellgren Centre for Rheumatology in Manchester
Does anyone have any experience of these or can anyone suggest any others?
My main difficulty is that despite feeling unwell every day I am constantly told that my lupus is 'stable' and therefore am offered no treatment.
I would appreciate any tips or advice!
Thanks 
Hi Jessie_2014
Well I can recommend Dr Parker at MRI Kellgren Centre. I was initially seen at Salford royal but asked for a review of my case. He was very thorough, listened well and I am going for my next appointment with him next week. I have been suffering terrible fatigue from MCTD and he has suggested possible immune suppressants as I have been on hydroxychloroquine for almost 2 yrs and can still only manage a four day working week still have no energy to do anything by the time I get home from work, not even the dishes after making tea!
Good luck!
Thank you cath-c. That is very helpful! I hope things improve for you. Fatigue is very frustrating!
cath-c can I also ask how long did it take to get an appointment once you had been referred? Thank you.
Hi jessie_2014 . it took 4 months to get the appointment from referral for 1st appointment review and my 2nd appointment 8 weeks later (which is next week) I had asked for a review as I knew they specialised in connective tissue disease and lupus and therefore hoped to be seen there. I would definitely pursue it.
Thank you for getting back to me. It is very useful to have feedback from people who have first hand experience :). Hope your second appointment goes well!
No problem, I am so glad I asked for the review. Just for piece of mind. All the best and hope you get an appointment soon! x
Sorry for sounding thick, but I thought if it was NHS you had to see the Rheumie at your local hospital?
When I do see my Gp she does talk a lot about budget and would not prescripe 50mg instead of 100mg of a table- I was trying to cut down and cutting by 100mg seemed too much- as it cost too much! I am now on an even higher dose!
Hi Swizzle14. Patients have a legal right to choose where they access their treatment as long as it meets NHS costs and standards. see chooseandbook.nhs.uk/patien... for more details
Thank you, just been for Rheuie appointment running 45mins late but I expect that. Felt like I was rushed in and out in just over 5 mins! Not seen a consultant for over 12 mths. I am going to be reffered for some tests.
But came out without my monitoring blood test forms and forgot to ask about flu/ pneumonia jab!
Only 1 person waiting after me
Hi, I can recommend Dr.M.Akil at the Royal Halamshire Hospital, I have been seeing him for years and have never heard anyone say anything that is not good about him. HE LISTENS. Good luck and spare spoons.xx
Thank you Hazel. Yesterday I felt alone and now I don't know who to pick! It is great that there are some good consultants out there! Thank you for your comment and take care x
My geography is not very good so this may be too far for you but I have had a tertiary referral to see Prof Caroline Gordon in Birmingham. She is globally recognised and has dedicated lupus clinics. The approach is very different to that of my local hospital. I waited only 2-3 weeks once they had received my referral (which took 3 months to be generated). Good luck!
I live in Hull and am under Dr. Bagley at Hull Royal - she is brilliant - very thorough - and is an excellent lupus specialist as well as rheumatologist - she runs her own clinics so you usually see her every time you go - ask to be refered to her she trained at St. Thomas's in London and I can highly recommend her.
Hi Sue, I too was under Dr Bagley to start with but have been told she'd left and saw a man last time who was so awfully unsympathetic. Can you tell me if Dr Bagley is still available in Hull?
I hadn't heard that she had left - I have an appointment with her soon so will find out - the letter came the other day and it still says her clinic so maybe she was just doing other things that day . She does love working in A & E too ! I will see if I can find out anything and get back to you - Sorry to hear about that "Man" - Dr. Bagley has so much time for her Lupus patients I do hope you are wrong about her going.
Hello Hullsue
I realise yr post here is 4 yrs ago so you may not even be on this site anymore. I’m in Hull being treated for UCTD at HRI under Dr Patel since Sept 2017. He is unsympathetic, rude and treats you like you are wasting his time. Who are you being treated by now and are they any good ?
Hi Bee1011 - I am still under Dr. Bagley - she is a wonderful rheumatologist - she hasn't left Hull Royal . She is very caring and as she specialises in Lupus she understands the illness properly . Ask your GP if they will refer you to her. Tell them you have no confidence it Dr. Patel and that he doesn't seem to understand your problems. Let me know if you get sorted. all the best xx
Does anyone know of good rhuemy in scotland, that understands ra and fibro mines has her mind made up before you go in. Only see her every 2 years.
I am under Professer Emery at Chapel Allerton Hospital, Leeds. I was diagnosed with Lupus a year last August. All my blood tests and scan tests etc were normal, but lastly I had a skin biopsy which came back as lupus. I was seen pretty regular before being diagnosed, and although my skin is a lot better, I believe I do have flare ups with aching muscles and joints, also the extreme tiredness is a problem. I did have an appointment last October and was told about 8 weeks for the next, but could be longer. I eventually had to ring up in March to chase up an appointment as I had had a flare up. I did get one for beginning of May and then was seen again in June and was told 3 months, so am awaiting an appointment. Hope I get one soon as I am having a rather bad time of it. Fatigue, aching, joint pain and horrendous headaches. I do see my GP next week for a meds review so will see what she suggests. Hope it helps you Jessie_2014. Good Luck x
Hi, did you find a good rheumatologist in the area?
I too am looking for one. I think the last one I saw was the most unsympathetic, uncaring person I've ever dealt with. I walked out of his room and burst into tears having to be consoled by an auxiliary nurse.
I've had problems for 14 years. Was diagnosed with lupus a few years who but since had that diagnosis removed as the ANA disappeared. I'm in constant pain, have other autoimmune problems such as thyroid disease and pernicious anemia, constantly tired etc etc.. The list goes on. My GP still suspects Lupus or possibly Fibro, but a suspect or possible isn't helping me now. I worry about my mental state, some days I swear the only thing keeping me here is my children. My quality of life is being dragged down phenomenally and I'm desperately seeking a rheumy in the know how now.
Xx
Hi thanks for yr quick reply,
I have Scleroderma not Lupus,
my mistake I thought I was in the Scleroderma & Raynauds Community. I’m considering referring to Leeds to see Dr Del Galdo or Prof Buch as they both Specialise in Scleroderma.
It’s good you found a good consultant who understands yr illness I hope I do too.
Thanks again x
First rheumatology appointment tomorrow
first Rheumatology appointment today
Frustrating Rheumatology appointment 
First Visit to Rheumatology.
