From Executive Officer Rachel Annals, HAE UK
HAE UK have been working on and supporting a number of projects over the past few months: Our recently launched nurses’ program, developed in conjunction with our nurse advisors, has been developed for nurses who have not dealt with HAE before to learn and understand the condition and treatments. It is also beneficial for nurses who need their knowledge refreshed. Another new project at one of our hospitals in Birmingham, is to have a clinical psychologist available for HAE patients. This is a new project being run as a clinical trial, which we hope we could roll out further around the UK to HAE patients in need of support when diagnosed or to manage their condition. We are also supporting a Fitbit project at one of our hospitals in Cardiff, to study the effects of exercise and weight loss on HAE attacks.
We have been working with the pharmaceutical companies and the National Institute for Clinical Excellence on submissions for Berotralstat in England, which was later approved. We are now following this up with The Scottish Medicines Consortium for approval in Scotland.
We have sadly decided not to host a 2021 Patient Day in the UK. After much deliberation, and with feedback from our members who felt unsure about traveling and meeting in a large group, we decided to postpone and will hold a large event next year, when hopefully things are back to normal.
HAE UK are also seeing some further changes in our management: Our Chief Executive Officer, Laura Szutowicz, resigned from her role to take up a position with a pharmaceutical company. Laura says: “I have enjoyed every minute of my six and a half years in the role, mainly due to the terrific support of the Trustees and the members, and particularly due to Rachel who has been my right (and probably my left) hand! We have had some memorable times and I have great memories of all the various patient days and getting to know so many members. I hope I shall still see some of you at meetings in the future.”
HAE UK have successfully recruited a new CEO, Angela Metcalfe, who started in the role at the beginning of November. Angela joins HAE UK from both a commercial business background and working together with CEO and Director level within an autism charity, as well as for a charitable foundation. She understands the frustrations that can exist with accessibility to support, especially around medical needs and mental health. Her main focus will be to raise awareness of HAE, to help develop better sharing of information about the illness within the UK Rare Diseases Framework that is currently under development, and to grow the training programs in place throughout the National Health Service.