HAH Patient Forum Representative
I’m Joanne Nicholls and my daughter, Francesca, was diagnosed with Von Willebrands Disease Type 3 when she was 18 months. We had no known family history but since her diagnosis other family members have been diagnosed as Type 1.
Francesca is an active little girl who loves to climb and I resist the urge to wrap her in cotton wool! Francesca’s diagnosis threw us into an unknown world of needles and hospital visits but her Haemophilia Centre have been so supportive throughout.
After a number of trips to A&E we had a port fitted and started prophylaxis. Being able to manage treatment at home rather than emergency hospital visits was life changing for our family.
I was really excited when I was asked to join the Healthcare at Home patient forum. It has enabled me to give open and honest feedback about their service but more importantly help to shape an improved customer experience for everyone.