Scleroderma & Raynaud’s UK have contacted us in relation to concerns which have been raised by their members regarding various challenges with care in Northern Ireland.
Some of the issues include appointments such as Iloprost transfusions being cancelled and, when they do happen, the regular half-hourly checks not being done, that the rheumatology ward is being used for dementia patients and that rheumatology specialist nurses are still being redeployed elsewhere.
SRUK have asked us to reach out to our community to ask if you are experiencing similar issues. We would be very grateful if you would share your experience with us at alida@lupusuk.org.uk or by private message to me here on the forum. We will share anonymised examples with SRUK who are looking to share their concerns with the Hospital Trust.
Thank you very much.
Kind regards
Alida