Okay I’m not going into a massive rant as I don’t think I will stop crying but just seen my rheumatologist and I’ve just had enough. Honestly!! I cannot take anymore and have decided I have to see another hospital where they actually listen. Please can anyone advise me on a decent rheumatologist. Where’s the best place in the country on nhs who actually listens and can help look at the ‘abnormal’ and not the normal.
Thank you
I had problems with my local hospital and my GP eventually sent me to the Royal Free. I found it a stressful struggle to get the 2nd opinion referral but no more stress than staying local. Unfortunately I still have to stay connected to the local hospital as I might need them/can’t travel to London multiple times a year. My problem was that I didn’t fit into the local hospital’s norm and I felt not listened to. You have to do what your gut feeling tells you is right for you.
I've very recently seen Dr. Soliotis at Poole Hospital regarding a painful hip. I have only seen her the once, she did listen and was very helpful & supportive.
Good luck in finding someone.
Doctor Goh Queen Alexandra Hospital Portsmouth. Brilliant Doctor listens to what you have to say.
I’ll second the Brilliant Dr Leslie Goh, I was a patient of his at his previous hospital, Taunton Musgrove Park. He left a couple a couple of years ago, I still use his last clinic letter as a reference point of my conditions. At least one of the (locum) consultants I’ve seen since had no idea about my condition and their clinic letter to my GP was shocking in comparison to Dr Goh’s. I’ll have to look into whether I can get a referral to him at Portsmouth.
Dr Emma Derrett-Smith at the QE Birmingham is superb. Specialist in scleroderma and excellent attitude.
Flowflow,
If you do find a Doctor that can treat you to ease your symptoms, please, please, please ensure that you complain back to your local hospital & the regulator the CQC to ensure lessons are learnt and no one else suffers as you have.
Things won't change until more of us do this.
Sarah x
(Successful complainer!)
I recommend you go to a specialist in scleroderma, like at the Royal Free. I was referred there about 8 years ago and they diagnosed my scleroderma and now see me every year to keep an eye on me. They are really good. Scleroderma is a very complicated condition and I recommend you see a scleroderma specialist. Good luck.
So sorry to read your woes, I know exactly how you feel.
The Royal Free is the best place, apparently, Professor Denton (I think), I saw him approx 3 yrs ago. When I arrived the hospital had lost all my paperwork, had to wait hours whilst my rheumatologists secretary in Salisbury was located (thankfully, phew) & faxed everything thru again. Almost an aborted expensive trip. I've only had the one appointment, Limited Scleroderma confirmed, no treatment or advice on how to proceed given, or even known how to. Professor Denton was lovely, thorough, listened, tho had no answers or suggestions.
It seems to be a "watch & wait" mind set. In Salisbury I'm supposed to have echocardiogram, lung function tests & see rheumatologist annually, which don't always happen unless I remind the hospital they're overdue, one time it was two years! My bowel hasn't worked properly for almost 4yrs, may be due to scleroderma, no one knows.
I've had tremendous battles, often paying private, still no diagnosis, answers, resolution.
My rheumatologist in Salisbury is Dr Sarah Bartram, she is very accommodating, listens, then nothing happens for another 12mnths, sometimes much longer, until the next tests, consultation. Staffing levels are a problem, not enough consultants with relevant knowledge, such as it is.
Apologies for my negative post, I too despair. Medical professionals do not always have the answers.
Professor Denton would be my suggestion.
Good luck, I wish you well.
Dr Anderson Aintree University Hospital Liverpool .Also great specialist nurses There.Highly recommended.
Hi there, I see Dr Marshall at Bristol Royal Infirmary, on my first visit he referred me to Prof Denton from the Royal Free who does outreach there a few times a year. They are both amazing, I was referred for loads of tests straight away, they really listened and put my mind at ease with what was looking pretty break initially. Their specialist nurses are also very knowledgeable and helpful. I have been able to make private referrals in the first instance with all of the various consultants just to get the ball rolling. I am at the start of my journey, hopefully I will still feel supported in a few years.
Bless your heart 💗
I can’t name anyone specific, but I do seem to get better treatment in Leeds than others have elsewhere. I always assume it’s the two large University Hospitals that give me my good fortune.
I8 months ago I moved and did my research. Aintree Uni Teaching hospital has a department which specialises in Scleroderma. Dr. Marina Anderson and her team are wonderful, very empathic and patient centred. They can be reached via phone and always call back within two days. If you are in the north west, would suggest your referral is there! You must speak to your GP and request a referral Sri one of the few ‘specialist’ units in the uk. Don’t give up! X
After having the same problem as you (including the tears) at my local hospital, I asked my GP to refer me to the Royal Free. I saw Dr Emma Derret-Smith; she works there once a week, as well as in Birmingham . They were really thorough with the testing and helpful. I had a diagnosis of erythromelalgia confirmed, plus some inflammatory arthritis. The Dr D-S suggested that I have a follow up at my local hospital, but I explained how dismissive they were so I don't have to do that thankfully. So yes, I was listened to. Good luck to you.
Sending love and strength from the USA. Same issues here--my first rheumatologist didn't know much about LCSS and my general providers certainly have not. I was an oncology nurse specialist for 25 years and always made sure to find out all the best practices for my patients, no matter how rare the condition. It has been dismaying to be on the patient side and not have an advocate in my corner after all those years of doing it for others. Rare conditions suck. 
Finally had a visit with a new rheum and am feeling hopeful....
Me too in nashville TN.
Hello flowflow, some great replies & recommendations here, what a great place this forum, SRUK & SRUK News is. I’ve replied earlier to Dustymolly14 regards Dr Goh at Portsmouth Hospital. Professor Denton, I’ve not seen him, but as mentioned he is regarded as one of the leading lights in this field. All will be ok, best wishes.
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