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

2. 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

3. 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

4. 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

5. 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

6. 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

7. 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

8. 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

9. Still Concerned! National helpline and telephone consultations
Run by Rosemary Ashton
Available Tuesdays and Wednesdays

10. 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

11. 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