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Where can I find a scleroderma specialist?

5 posts in this topic



Thanks for all your replies. On my last post several members asked if I was seeing a specialist at the hospital. The answer is no, my consultant has openly told me she doesn't know much about scleroderma.


How can I find out if there are any specialists in my area (Durham, England) and then how would I get to see them? Any advice would be great.





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Hi Diana,


I've also put this info in your 'Balance Problems' post. Leeds should be doable from Durham. Hope this helps! Best wishes,




Institution: Leeds University, Academic Unit of Musculoskeletal Disease

Department of Rheumatology

Leeds General Infirmary

Great George Street

Leeds, West Yorkshire LS1 3EX



Coordinating Investigator: Professor Paul Emery, BA, MA, MBChir, MRCP, MD, FRCP


Other Local Participants: Cheryl Fernandes, MBChB, MRCP

Naomi Reay, RGN, RSCN, BSc


Fax Number: 44 113 39 22896

Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Hi Diana,


In NHS, what do you have to do to see a scleroderma specialist? Can you make the appointment directly, or do you need to be referred from your primary care provider?

Warm Hugs,


Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099


The most important thing in the world to know about scleroderma is sclero.org.

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Hi Diana and Shelley, I think there are a couple of ways that referral to Scleroderma specialist outside your local area could be done work within the NHS system: 1. General practitioner refers you 2. Your rheumatologist refers you to specialist centre. I would think that the second option is a more likely approach- the general practitioner would generally refer you to a local rheumatologist and then let them take it from there. It would be worth asking the rheumatologist about this - especially as she is upfront about having limited knowledge of scleroderma. As far as I'm aware, your nearest specialist centre is at Chapel Allerton Hospital in Leeds (Prof Emery and team), although I know people from all over UK are referred to the Royal Free.



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Hello Shelley


Usually the general practitioner makes the referral to a specialist and if it's your first referral to a rheumatologist you can ask to be referred to a scleroderma expert. If you're already seeing a rheumatologist and they don't have enough knowledge about scleroderma you can ask they refer you to a scleroderma expert and if they won't ask your general practitioner.


As patients we have much more say now in who/where we get referred, have a look at How do I get a referral? on the NHS-UK site.


Take care.

Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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