Service provision for Adults with Neurofibromatosis type 1 Ruth Drimer (Clinical Nurse Specialist and Specialist Advisor for the NeuroFoundation)

Current Guidelines Every adult should be followed up once a year by there GP This should include a evaluation of the skin and BP for every patient

Individual Management Many differences in management of individual adults Based very much on issues affecting that individuals Some people may just see there GP every year Others under several different specialists Those with complex needs maybe followed up by the complex services in Manchester and London Care is much more on a needs based basis

Differences in Provision Some area now offer adolescent services Bridging the Gap between children's and adult services Often Nurse of Councillor led, with input from relevant medics Not available everywhere Provision varies across the country

Genetics Services Usually more of a diagnostic service New diagnosis can be referred in by GP Often see people for follow up if referred back in, but usually as a one off to co-ordinate care If thinking of a family referral to talk about options available GP’s encouraged to contact genetics if unsure how to deal with certain problems

Annual Follow Up If your follow up is with the GP you will be responsible for organizing this You won’t be sent a yearly follow up automatically Need to make a note of any changes, or anything new and report this to your GP If you are concerned you do not need to wait a year, always seek advice. If you can see the same GP as they will have a clearer understanding of your condition

Things to be aware of Report any lump that changes in texture from soft to hard, grows rapidly in size or any pain that lasts longer than 2 weeks and cannot be explained Numbness or pins and needles in arms or legs Headaches that are getting worse High blood pressure may be due to different reasons. Look out for other symptoms such as unexplained anxiety, weight loss and profuse sweating. Vitamin D can be low (sunshine vitamin) – request blood test from GP Women should have breast screening from the age of 40

What to do if you are concerned Contact your GP – Always say you have Nf1 Contact your Specialist Advisor Liaise with you GP May be able to facilitate referral to local genetics service If no SA speak to NeuroFoundation who may be able to speak to clinical staff

Still Concerned! National helpline and telephone consultations Run by Rosemary Ashton Available Tuesdays and Wednesdays 07866946334 www.nfauk.org

Looking after yourself Important the you understand about Nf1 Need to know what to look out for Neurofoundation raising awareness, but may still feel you know more about your condition than some health professionals Lots of written information on Neurofoundation website

Never a silly question Most adults happy and healthy Don’t ignore problems Always seek advice when not sure Make sure you keep up with your annual check-ups