Need new consultant

I have had lupus for 21 years having been diagnosed by Dr Bucknall at the Royal in Liverpool. He has been fantstic over the years and got me through some really bad times. He retired a couple of years ago and all his patients were taken over by Dr ****. I have only seen him a couple of times, usually get seen by Reg. but have been getting more and more disillusioned each time. Last visit got talking to fellow patient in the waiting room and was shocked to hear she was having a similar experience so I decided to confront Dr ****. It did not go well!!!!! He has now decided in his opinion he is stopping my mediction and will not see me any more. I haven't felt this ill in years and don't know where to turn, I need a new rheumy who knows about lupus. BTW my GP and Pain Management Consultant still say I do have lupus.

I have now found a forum full of comments about Dr **** stating similar probs. It really shocked me but don't feel quite so alone but don't know where to turn now for support

12 Replies

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  • I have just read a letter with similar content as yours. She has managed to get her GP to refer her to the Manchester Royal infirmary. She is now seeing Doctor Ian Bruce. Shhe advices for anyone that was seeing Dr Bucknall to asked to be referred to Dr Ian Bruce. I really hope this helps you. :)

  • Thanks I read that post as well, its a few years old but I've researched Dr Bruce and think I'll try ands get referred there.

  • It's such ashame, I have the same problem down here, seen by a different f1 or reg every time, trying to see my consultant is awful, not his fault he's so busy, I'm pain 120 for half an hour consult recently just so I could see him.

  • Its been an awful couple of years, Dr **** and team have now decided that I do not have lupus as my blood ana was negative. this despite me pointing out that over the 20 years I've had lupus sometimes its been positive sometimes negative! I have all the other classics of lupus plus a few others as well. One of the F1's poked my shoulders and hips and said he thought I had fibromyalgia instead (although I do not fit that criteria). This I have discovered seems to be Dr **** illness of choice and I have been in contact with 3 other patients of Dr Bucknall who have had their lupus diagnosis changed by Dr **** to fibromyalgia!

    I'm contemplating going to the London clinic run by Dr Hughes as I'm so desperate but its really expensive because he has you there for 5 days. Thanks for replying though, sometimes I'm made to feel like a hypochondriac by doctors who just do not understand the complex and changing nature of Lupus. Take care x

  • I have a similar problem with my consultant. I was diagnosed about 3 years ago, she keeps sending me for xrays on my hips and says I don't have bad arthritis as it don't show, even though I am in great pain and can't walk very far at all. Of course Lupus Arthritis does not show on xray.

    She says I have Lupus SLE but it is only in my blood which is unusual, this is because I don't have the rash. She was away at my last appointment and I saw a stand in and he said Lupus showed in my blood but I don't have any of the symptoms like a rash or my hair falling out.

    I get very fatigued, I am always in severe pain, I get night swets where I go from sweating and throwing covers off to being freezing cold. I have a lot of other problems as well. I wish I could find someone who knows about Lupus.

    Anyone know of a good doctor in Barnsley South Yorkshire?

  • Every lupus patient is the expert of their own condition, and finding a good rheumy team that really gets it is so hard. Dr Bucknall treated the whole person, listened when you told him about problems and treated them systematically even if they didn't fit the classic SLE profile. He knew not to pigeon hole people because then important stuff gets missed. I just hope both you and I can find a team that can do this. Thanks for replying its good to know that unusual symptoms I experience sometimes are part of SLE. Take care let me know how you get on :-)

  • This is awful. You are entitled to make a choice about who you see. Its patient choice all the way these days. Get yourself someone new to see. You shouldnt have to put up with this kind of treatment. I worked for the NHS for 34yrs and you are allowed to change your rheumatologist. Hope you get on ok.x

  • Thanks for the reply I am in the process of getting referred for a 2nd opinion but its an uphill struggle as the previous consultants opinion is colouring GP view. Sad thing is I also work for NHS and have on and off for 32 years and would never allow one of my patients to be treated like this.

  • I'm under Prof Bruce at the MRI, he is really good and so are the rest of the consultants there under him, they hold a lupus clinic once a week i think and there's information everywhere for you to read. Its a very lupus orientated rhuematology department, makes you feel in very safe hands, you should definitely try and get seen there!

  • Thanks for reply all this support is really helping because I was in a very low place. You really shouldn't have to fight and argue to have a condition treated correctly.

  • Just noticed on my posts that the name of the consultant has been asterixed. I assume this has been done by whoever oversees this page and I apologise if they felt I was naming and shaming I was merely being truthful and correct in stating the case as it is. If that was naming and shaming then the asterix speak for themselves. Thanks for all the support

  • Hi j7blupus,

    I sent you a message to explain why I had to edit your post.

    I completely understand that you are upset because of the poor care you've received and I can understand that you may want to warn others. However, I can't allow named criticisms on this site. We could accused of libel.

    I hope that you can understand.

    Paul

    LUPUS UK

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