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Where can I find a scleroderma specialist?


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4 replies to this topic

#1 winnie97

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Posted 17 October 2010 - 11:14 PM

Hi,

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.

Thanks,

diana

#2 Jeannie McClelland

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Posted 18 October 2010 - 02:39 AM

Hi Diana,

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

Jeannie

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#3 Shelley Ensz

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Posted 23 October 2010 - 01:24 PM

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?
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#4 lizzie

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Posted 24 October 2010 - 04:01 AM

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.

Lizzie

#5 Amanda Thorpe

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Posted 24 October 2010 - 08:51 AM

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.
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