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winnie97

How to find and see a good consultant

8 posts in this topic

Hi, I live in northeast England near Durham and to be honest I'm not impressed with my consultant at the hospital as she has never treated anyone else with systemic sclerosis (SSc). I feel like I'm an inconvenience to her as when I see her there is a lot of sighing on her part and she can't wait to get me out of the room. Her cure all seems to be a steroid injection for everything, which by the way have never worked; only long courses of steroid with methotrexate do the trick for me!

 

She told me I didn't have Sjogren's and that my very dry eyes and mouth were down to a type of medication I was on. I told her that I had stopped it months ago so why would I still have those symptoms? Well, shortly afterwards the eye clinic confirmed I had it when I went as an emergency as I couldn't stand any light at all and they said they had never seen as many dry spots on someone's eyes before. And did some tests, to confirm it. 1 to me I think.

 

Anyway What I would like to know is, how do I find a consultant who knows about scleroderma?

 

And how do I get to see them?

 

Any help would be great.

 

Diana

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Hello Diana

 

The Royal Free in London is a centre of excellence for scleroderma so get a referral there. You may well have to travel but it's worth it. Alternatively look at the list of experts provided by the Scleroderma Society. Don't entertain your current doctor any longer!

 

Take care.


Amanda Thorpe

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International Scleroderma Network (ISN)

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Hi Diana,

 

I'm sorry to hear that you've got such an unhelpful consultant; it must make it so difficult to deal with someone in whom you have very little confidence.

 

I was very fortunate in that right from the first general practitioner I saw to the local lung consultant and the top specialist lung consultant, I've always had first rate treatment from specialists I can trust. Thankfully, none of them have had large egos and they had seen manifestations of Scleroderma before, so could tell what they were dealing with. Sadly though, I know that your problems with consultants are not unique and that sometimes treatment on the NHS (particularly for a rare disease like Scleroderma) can be a bit of a lottery.

 

Amanda's given you excellent advice about Scleroderma experts on the list provided by The Scleroderma Society and I can also reiterate her remarks about The Royal Free as, like Amanda, I'm a patient there myself.

 

Kind regards,


Jo Frowde

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Hi Diana,

 

I live South of you in West Yorkshire and my (and yours) nearest specialist is Chapel Allerton hospital in Leeds. Perhaps you could ask your general practitioner to refer you there? It would be more convenient and much less expensive than travelling to London for you.

 

Lizzie

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Hello Diana

 

The specialist Lizzie is suggesting is:

 

University of Leeds

2nd Floor, Chapel Allerton Hospital

Chapeltown Road

Leeds LS7 4SA, United Kingdom

Tel.: 0113 392 4884 / 3438412

Fax: 0113 392 4991

 

Let us know how you get on where ever you end up!

 

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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Hi Diana

 

I live near Darlington and go to the Freeman Hospital in Newcastle, where the consultant is excellent. I am very happy with the care I receive there.

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Hi, I live in Ryton near Gateshead and I've been seeing a rheumatologist at the Queen Elizabeth Hospital who understands the condition well.

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As I have put in another thread, I have just been referred to Chapel Allerton hospital after seeing probably around 3 adult consultants and 3 or 4 paediatric ones when I was younger; Chapel Allerton has been the best so far. I may look into getting a referral to The Royal Free; it's a travel but it could be worth it.

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