About this event

  • Date and time Mon 13 Jul 2020 from 2:00pm to 6:30pm
  • Location Royal Society of Medicine
  • Organised by Medicine and Me

Please note: This event has been postponed and is now planned to take place in 2021. This page will be updated as soon as we have more details, and we will also contact booked delegates directly with this information. We apologise for any inconvenience this may have caused.

Jointly organised with Nerve Tumours UK, this meeting will give you an understanding of what it is like to live with nerve tumours.  

Hear from people living with nerve tumours and clinicians as we review and discuss current approaches to diagnosis and treatment, in the light of advances in molecular biology and imaging.

 

What will you learn?

By attending this meeting, you will have the opportunity to:

  • Understand the epidemiology, biology and genetics of Nerve Tumours - neurofibromatosis I (NF1) and neurofibromatosis 2 (NF2)
  • Appreciate the impact of living with NF1 and NF2 nerve tumours first-hand from patients 
  • Learn about the recognition of malignant transformation (NF1)
  • Discover the management of NF2 nerve tumours
  • Explore today’s treatments
  • Understand the management and support for people with nerve tumours

 

About Medicine and Me

Medicine and Me meetings aim to provide an outline of current best practice and future updates of important conditions and to give direct voice to patients and their carers and enable them to discuss their concerns and reflections on the impact of diagnosis, investigation and management.

Physicians and surgeons and indeed all healthcare professionals continue to learn from and be inspired to greater efforts to improve care by hearing directly from patients.

 

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Agenda

View the programme here

Registration
Welcome

Dr Fiona Moss, Dean, Royal Society of Medicine

Introduction

Professor Rosalie Ferner, Guy’s and St Thomas’ NHS Foundation Trust, Professor Gareth Evans, Manchester University NHS Foundation Trust,  Dr Dorothy Joe, SpR Neurology, Guy’s and St Thomas’ NHS Foundation Trust and Mr Michael Fry, Chair, Nerve Tumours UK

Session one: Symptoms and diagnostic journeys and parallel symptoms

Epidemiology, biology and genetics of nerve tumours (NF1 and NF2)

Professor Gareth Evans

Panel discussion

Session two: Diagnosis and clinical manifestations - parallel sessions

NF1: Benign and malignant nerve sheath tumours in NF1

Professor Rosalie Ferner

NF2: Vestibular schwannoma and meningioma

Professor Gareth Evans and Raji Anup CNS Manchester University NHS Foundation Trust

NF1: Impact of living with nerve tumours: Birth to old age a patient and a parent’s perspective

Richard Goode, Parent and Alex Hetherington, Patient

NF2: Impact of living with nerve tumours: Birth to old age a patient perspective

Emily Owen, Patient

NF1: Questions and answers
NF2: Questions and answers
Tea and coffee break

Session three: Management of nerve tumours - parallel sessions

NF1: Surgical treatment options for plexiform

Mr Simon Eccles, Plastic Surgeon, Chelsea and Westminster Hospital NHS Foundation Trust

NF2: Management of NF2 related tumours

Mr Nick Thomas, Kings College Hospital NHS Foundation Trust

NF1: Medical treatment options: Use of selumetinib and pain relief

Dr Karine Lascelles, Paediatric Neurologist, Guys and St Thomas’ NHS Foundation Trust London and Dr Grace Vassallo, Paediatric Neurologist, Manchester University NHS Foundation Trust

Quality of life in NF1 and NF2: Joint session
  • Wellbeing, self-care and self-management in long-term conditions
  • Mental health issues in neurofibromatosis
  • Getting mental health support
  • Holistic pain management and mindfulness

Judith Eelloo, Clinical Nurse Specialist, Manchester University NHS Foundation Trust,
Dr Alastair Santhouse, Consultant Psychiatrist, South London and the Maudsley,
Dr Susie Henley, Clinical Psychologist, Guys and St Thomas’ NHS Foundation Trust London and
Mary Thomas, Clinical Nurse Specialist Guys and St Thomas’ NHS Foundation Trust London

Panel discussion

Chairs: Professor Rosalie Ferner, Professor Gareth Evans and Dr Dorothy Joe

Close of meeting

A drinks reception will follow the meeting, which all attendees are invited to

Location

Royal Society of Medicine, 1 Wimpole St, Marylebone, London, W1G 0AE, United Kingdom

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