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I have worked in the Scleroderma Unit in the Centre for Rheumatology at the Royal Free since May 1992. Starting as a volunteer working one day a week doing clerical jobs, I would file, photocopy and general tasks in order to help the fairly small team then. With improved health and able to work two days a week, my role has grown to include more responsibilities which included booking patients with Connective tissue diseases medical tests to co-ordinate with their clinical appointments so the patients time is well spent at their clinic appointment. The scleroderma team keep this as high priority as we do understand that people's time is precious and that some are travelling great distances to come to our unit.

Norlan is our new patient pathway co-ordinator who will help ensure that tests and clinical appointments are booked on the same day. Norlan works Wednesday, Thursday and Friday and can be contacted on 020 7794 0500 ext 32909. With Norlan on board, this enables me to work on specific projects that are currently being implemented on the research side of rheumatology but I will also be involved on the clinical side as well.

Being a scleroderma patient for the past twenty-four years, I have experiences which I am more than happy to share with other scleroderma patients on a patient to patient basis. Through my own experiences, I have full understanding of isolation and fearfulness which some people might experience whilst coming to grips with this condition and I am on hand as a fellow scleroderma patient for you to talk to if you so wish. I should stress that I am not a consultant, counsellor or therapist, I am someone who may understand what you may be going through and I'm available on Tuesday and Wednesdays.

If you should ever find yourself staying as an inpatient at the Royal Free and would like a visit, please contact the ward staff and they will gladly phone me to come and say hello.

I would also like to mention that if you find yourself on the ward, you may be interested in Keith Hunt's services. He has a team of volunteers who are more than happy to come to the wards and offer a massage service which can be arranged via the ward staff. I highly recommend this highly specialised service. I am usually available on Tues and Wed (but do try other days, Millie will tell you when I will next be in).

I can be reached Tuesday and Wednesdays on 020 7794 0500 extension 35131 or alternatively, you can contact me via e-mail on: kim.fligelstone@nhs.net

 

 

 

Kim Fligelstone