Medicine and Me: Living with nerve tumours
Jointly organised by Medicine and Me at the Royal Society of Medicine and 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 exploring living with nerve tumours, 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
AGENDA
Registration
Welcome and 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
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 and Alex Hetherington
NF2: Impact of living with nerve tumours: Birth to old age a patient perspective
Emily Owen
NF1: Discussion
NF2: Discussion
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
NF1 and NF2 Joint session: Management of symptoms
- Mental health: Anxiety and depression
- Pain
- Appearance
- NF specific challenges to delivering therapy
- Challenges for the care
Dr Alastair Santhouse, Psychiatrist, South London and the Maudsley,
Dr Susie Henley, Psychologist, Guys and St Thomas’ NHS Foundation Trust London,
Mary Thomas, Clinical Nurse Specialist Guys and St Thomas’ NHS Foundation Trust London and
Judith Eelloo, Clinical Nurse Specialist, Manchester University NHS Foundation Trust
Panel discussion
Panel: Dr Alastair Santhouse, Dr Susie Henley, Mary Thomas, Judith Eelloo and the Patients
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
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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