Our Neurofibromatosis Nurses are employed by the NHS and Nerve Tumours UK (NTUK) The vision of the Charity is to improve the lives of those affected by Neurofibromatosis Type 1 and 2. The focus of the role is to provide up-to-date and accurate information about NF1 and NF2. Our nurses have divided their coverage as follows:
- Carolyn Smyth (Tuesdays & Thursdays) - West Midlands, Staffordshire, Shropshire
- Melanie Murrell (Thursdays & Fridays) – Warwickshire, Herefordshire, Worcester
Nerve Tumours UK have a helpline available on Mondays and Wednesdays from 9-5 and the number is 07939 046030. Carolyn works on the helpline on a Wednesday.
Our nurses provide the following:
- Telephone support
- Home visits (where appropriate)
- School visits
- Meetings to liaise with other agencies including Teachers, Occupational Therapists, Educational Psychologist, Medical and Nursing staff
- Education advice regarding NF1 and Learning Difficulties. This forms part of the Charity’s iNForm strategy to educate patients and professionals regarding NF1 and Learning difficulties
- Regular presentations at medical and scientific meetings in order to raise awareness., helping to develop services locally by providing support to local NF Clinics
For more information/downloads please visit Nerve Tumours UK. Clinical guidelines can be requested from our Head Office online or by calling 02084391234. Best Practice/Review Guidelines are very helpful for GPs and patients alike as they give a brief overview of annual checks, what to do and when to refer.