29 June 2020
This year’s Neurofibromatosis Type 2 (NF2) National Meeting took place online, with medical and nursing professionals tuning in from around the UK. Participants included Professor Gareth Evans, Chair of The Nerve Tumours UK Medical Advisory Board and national lead for NF2, the charity’s Specialist Neurofibromatosis Nurses, representatives from all four NF2 Centres in the UK, representatives from NHS England & patient charities.
Clinical staff from all four centres and the NHS England representatives discussed the current situation in relation to changes to the service related to Covid-19 and how services are likely to adapt going forward over the next few months in terms of sustainability and safety. Further topics for discussion included Avastin data and outcomes, mortality outcomes over the last 10 years, hearing outcomes, and surgical outcomes. Earlier in the week, the NF2 psychologists from each centre had also met to review and discuss the service.
A further discussion, in the meeting, centred around patient experience based on feedback from the specialist centres. The response was all deemed to be very positive and the clinical teams appreciate the time people have taken to provide constructive feedback about what they do well, and the additional suggestions for improvement in the service.
The three charities representing people with NF2 were invited to take part in the final session of the meeting. Karen Cockburn, Charity Director, Nerve Tumours UK, Clare Goddard, Chair, NF2 BioSolutions UK and Suzi McGowan, Strategic Lead, Can You Hear Us each gave a presentation and update of the respective charity over the last year.
During this session questions were raised as to the ongoing international discussion concerning a new name for Neurofibromatosis Type 2, given that is a misnomer, and it was advised that it was still in the discussion phase, with all interested parties being invited to participate.