Jump to content


Congrats to Margaret, Platinum Member with 1,000 posts and 10 Years of Forums Membership!


Photo

sclerosis specialist nurse


  • Please log in to reply
4 replies to this topic

#1 Deb1million

Deb1million

    Silver Member

  • Members
  • PipPipPipPip
  • 108 posts
  • Location:Maldon, Essex, UK

Posted 18 June 2009 - 10:14 AM

I wondered if any of you have access to a specialist scleroderma nurse team?
I saw mine recently, (there are two in the team) and she was brilliant! She had more time than the rheumatologist, and gave me her direct phone number for any queries.

This is a great addition to seeing the regular doctor each visit.

Debs

#2 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 18 June 2009 - 10:57 AM

Hello Debs

Yes there are a team of specialist nurse at the hospital my rheumatologist is at. They can be phoned any day for advice as well as be seen when I'm at the hospital.

The Scleroderma Society and the Raynaud's and Scleroderma Association both have the numbers of specialist nurses in their newsletters and I believe anyone can telephone them for advice.

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)

#3 Buttons

Buttons

    Senior Silver Member

  • Members
  • PipPipPipPipPipPip
  • 610 posts
  • Location:UK

Posted 19 June 2009 - 03:16 AM

There's nothing like that at my hospital, it's just to small and an area which seems to have been forgotten with healthcare facilities and money!

I get more information from everyone here and on the internet than I do with my rheumatologist!

Jensue

#4 lizzie

lizzie

    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 497 posts
  • Location: UK

Posted 19 June 2009 - 06:53 AM

At the hospital I attend, there are not any scleroderma nurse specialists, but we do have 3 rheumatology nurse specialists. There is an advice line that you can ring and leave a message if you have any problems. They phone back within a short time to discuss the problem, consult with the rheumatologists if necessary, or get you to come in to the department to be seen. It is a great service as you know that you can get an almost immediate response to any problem.

Lizzie

#5 chockers

chockers

    Silver Member

  • Members
  • PipPipPipPip
  • 133 posts

Posted 25 July 2009 - 10:00 AM

i have a concetvive tussiue nurse but only seen her once .She is training up
iI am well concrolled so just see the other nurses .
I am luckey that my Rheumatlosist used to work at the Royal free in London .
i have a scleroderma overlap .

christine