Nurse’s Conference 2025

On 20th /21st November 2025, the charity gathered together its team of Specialist NF Nurses & Advisors from across the UK for their annual meet in South West London, near to where the head office is based.

This year we were joined by two new members, Gillian Jones, who has taken on responsibility for the North West region, and is based at Alder Hey Hospital in Liverpool and Lynne Highy, who has joined the National Helpline team.

On the first day, the NTUK team took part in a refresher training session with lawyers who specialise in PIP, and in the afternoon there was a lengthy discussion session covering such topics as new treatments, the role of the specialist nurse, and the clinical/non clinical needs of the NF community.

In the evening we were joined by Richard Goode, Chair of the Board of Trustees, and Jonathan Bruce, Vice Chair of the Board of Trustees. It helps the trustees enormously to meet regularly with the team of nurses as they are the ones in direct contact with the NF community every single day. It helps the trustees to concentrate on, and think about the broader issues  and the needs of the community, with regards to their strategic planning and their focus for the charity.

The second day involved further discussions on treatments, best practices, shared learning, head office updates and planning ahead with the team for the coming year. 

The meeting is a great opportunity to gain valuable insight from all our nurses on their work, their support for the community, and how we can improve on, and roll out our services.