Neurofibromatosis Nurses

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 (Northside), Staffordshire, Shropshire.

Melanie Murrell (Wednesdays & Thursdays) – West Midlands (South side), Warwickshire, Herefordshire, Worcester and Coventry

Nerve Tumours UK has a helpline available on Mondays, Wednesdays and Fridays from 9-5 and the number is 07939 046030. Carolyn works on the helpline on Wednesdays.

Our Nurses provide the following:

  • Telephone support
  • Home visits (where appropriate)
  • School visits
  • Attendance at NF1 and NF2 clinics
  • Meetings to liaise with other agencies including Teachers, Occupational Therapists, Educational Psychologists, 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 for medical staff from our Head Office online or by calling 020 8439 1234. 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.