The inaugural meeting of the new All Party Parliamentary Group (APPG) on Genetic Haemochromatosis (Iron Overload) took place on Wednesday 16 January 2019 at Portcullis House.
The meeting was attended by 7 parliamentarians, several patient representatives, and a small group of medical advisers.
Being an inaugural event the first part of the meeting was given over to the formalities. Mark Pawsey MP was elected as Chair. Five further officers (Vice-Chairs) were also elected, Julie Elliott MP, Ben Lake MP, Cheryl Gillan MP, Alex Norris MP, and Lord Francis Maude. Full minutes of this and all future meetings will be published on this website.
Members of the new APPG were then able to spend time asking questions of the patients and medical experts present. This buzzy discussion informed the adoption of terms of reference for the APPG, and a further discussion on the immediate priorities for the group.
Focus in this initial meeting was on the lack of consistency in the application of clinical guidelines where they exist, and the lack of clinical guidelines for some aspects of genetic haemochromatosis. The APPG also started to question the cost to the NHS of delays in diagnosis of haemochromatosis, leading to a suggestion that a health economic study may be required.