We recently wrote to The Newcastle upon Tyne Hospitals NHS Foundation Trust on behalf of our members about the apparent decision to permanently move the haemophilia centre from the Royal Victoria Infirmary. We have now received correspondence from the Trust and are pleased to confirm that the Haemophilia centre will
BLOG
School and Bleeding Disorders webinar.
Join us on Thursday 13 August at 7pm for our School and Bleeding Disorders webinar. We have three experts joining us for our school education session: a haemophilia nurse, teacher/youth ambassador and parent who will share their experiences with you. This webinar will help you prepare for your child’s return
Newcastle Haemophilia Comprehensive Care Centre
The Haemophilia Society writes urgently to The Newcastle upon Tyne Hospitals NHS Foundation Trust asking for an full explanation of the apparent decision to permanently move the haemophilia centre from the Royal Victoria Infirmary without consultation.
OFFICE UPDATE
Due to ongoing government guidance around working safely during COVID-19 our staff continue to work from home to ensure that everyone is kept safe. We currently have a reduced team working and are still contactable via our usual phone numbers and email addresses. We continue to offer support and
EHC Statement on Desmopressin Nasal Sprays availability
Late last week, we were informed of an international recall of all Ferring Parmaceuticals Limited nasal sprays containing desmopressin, including Octim®, Octostim®, Desmospray®, DDAVP Spray®. This spray is typically used in people with Von Willebrand Disease types 1 and 2 (except 2B) and mild haemophilia. It is also used for women with heavy menstrual
COVID-19 TESTING RESEARCH STUDY
If you have received this letter in the post and you have a bleeding disorder you will NOT be able to take part in this research study. The Haemophilia Society called the FREEPHONE number on the letter to query why and was informed that “its for safety reasons as this
In memory of Jane Tibbutt
Jane Tibbutt, who died, aged 80, in May 2020, lived with a bleeding disorder and, as a nurse and mother, cared for many others with haemophilia. Inspired by her warm personality, her family and friends have donated more than £2,000 to The Haemophilia Society in Jane’s memory to help us
Home delivery – tell us about it
If you get your medication through home delivery, we would like to hear from you. The Haemophilia Society is gathering feedback – good and bad – about home delivery of medication to find out if there are any areas that need improvement or examples of good practice that should be
New Framework for products for Haemophilia A
A new framework for buying medicines to manage Haemophilia A came into force across the UK on 1 July. This will run initially for 24 months. This framework differs to those in the past as it has been divided into 4 categories reflecting the different sort of products available, these
UPDATE FROM BOARD OF TRUSTEES CHAIR, CLIVE SMITH
3 July 2020 – Here is an update from our Chair, Clive Smith. This week he talks about the forthcoming new video series Bleeding Matters Live and a discussion about the contaminated blood scandal, with guests from Canada and Ireland. He also updates us on the task of hiring a