30 September 2021
This year’s Neurofibromatosis Type 2 (NF2) National Meeting took place on 21 June and was held virtually for the second year in a row. Hosted by the Oxford NF2 team, the event was attended by the clinical leads from all four of the NF2 centres in England:
Manchester - Professor Gareth Evans & Professor Andrew King;
Cambridge - Mr. Patrick Axon & Juliette Buttimore;
London - Mr. Rupert Obholzer & Dr. Shazia Afridi;
Oxford - Dr. Allyson Parry & Dr. Dorothy Halliday;
as well as many other members of the NF2 multidisciplinary teams from both hub and satellite centres and representatives from NHS England. In all, around 80 participants attended the virtual meeting, including the Nerve Tumours UK Specialist Neurofibromatosis Nurses.
Representatives from the three main national charities: Nerve Tumours UK (Karen Cockburn, Charity Director), NF2 BioSolutions UK (Claire Goddard, Chair), and Can You Hear Us (Suzi McGowan, Strategic Lead) all gave updates on the work of their respective organisations, representing people with NF2, as part of the session on patient involvement.
The NF2 psychology team also provided an update on a pilot of a patient experience questionnaire that has been in development across the four centres. Other sessions focussed on recent research, trials, available resources; Avastin; the use of stereotactic radiosurgery in NF2; and ophthalmology features related to NF2.
– Juliette Buttimore, Clinical Lead - NF2 Midlands/East
"“This was an excellent opportunity for the national NF2 service to meet online to discuss the challenges of the Covid-19 pandemic and to look at how our services plan to recover as staffing redeployments end and hospital capacity improves. We were also able to discuss recent trials and research and review the treatment data and outcomes for NF2 patients who have had interventions in England. The clinical outcomes have been shown to be excellent via the highly specialised service, and we continue to look at ways to improve the patient experience.”"