05 December 2023
The annual National NF2 meeting was held on Friday 24th November 2023 and hosted by the Cambridge NF2 team, at the Cancer Research building in Cambridge.
Nerve Tumours UK were in attendance, with Karen Cockburn, the Charity Director, updating attendees on the charity's activities and the support given to those affected by NF2.
This meeting is an opportunity for health care professionals working within the NF2 NHS service within England to meet with the commissioners at NHS England Highly Specialised Services to discuss the service, review patient outcomes and look at current best practice, evidence and potential new trials and treatments moving forward.
The clinical leads for the four NF2 centres (Oxford, London, Cambridge and Manchester) were joined by around 80 participants, some virtually. The participants included doctors, specialist nurses, genetic counsellors, audiologists, psychologists, radiologists and physiotherapists.
Manchester: Tim Lavin, Claire Forde and Jane Halliday
Cambridge: Patrick Axon, Juliette Buttimore
Oxford: Allyson Parry, Dorothy Halliday
London (Guys & St Thomas’): Shazia Afridi, Rupert Obholzer
The patient experience session was chaired by Jools Buttimore and Patrick Axon, clinical leads for the NF2 service in Cambridge.
This session is an opportunity for health care professionals and NHS commissioners working within the NF2 service to hear from charities who work with and support people with NF2. There were presentations given by Karen Cockburn, CEO at Nerve Tumours UK, Priya Sharma and Jo Ward from NF2 Biosolutions UK & Europe and Jess Everett, patient representative and CEO for Can You Hear Us.
– Juliette Buttimore
"These updates are an important way for the patient voice to be heard, to flag questions or concerns from the patient community, to show lived experience of the condition and to celebrate the fantastic work being done within the NF2 community to support people with NF2 and their families and friends, in terms of raising awareness and improving knowledge and understanding of NF2."
There was also a presentation given by the NF2 psychology teams from across the four hub centres to review information that was gathered from the previous NF2 patient experience survey that was run nationally, showing how the NF2 service is able to use patient feedback to improve the service.
A closed learning session for employees of the service followed, where staff were able to view presentations on facial nerve schwannoma management, discuss current audits taking place within the service and discuss open and prospective trials and research suitable for people with NF2.
Clinical outcomes for mortality, hearing and from the use of Avastin were reviewed across all NF2 centres, and showed excellent and comparable outcomes across all units.