1. The Neurofoundation Specialist Advisor Network
Ruth Drimer (Clinical Nurse Specialist and Specialist Advisor for the NeuroFoundation)

2. Impact of a diagnosis of Nf1
Often a sense of shock
Who gives that information
How it is given
Knowing how to access support?
When?
Lack of expertise and misinformation
Terminology
Impact on all family members

3. Unpredictability and Variation
“most diseases will unfold in a certain way. Slower or faster. With NF, because symptoms are so unpredictable and variable, you don't know whether there will be symptoms, what they might be, or if they will be serious. You never get your balance or equilibrium on how to deal with it...it is not just that there are big fires and little fires, there is always the worrying sign up that says “Danger of Fire”. The psychological burden is always there regardless of the extent of the physical problems. Even when the symptoms are minor you still know something is there. The internal stigma make people carry themselves differently even though others can't see it”.
Ruth Ablon

4. The NeuroFoundation
“to improve the lives of those affected by neurofibromatosis”
funding Specialist Advisor posts …working in the gaps between health, social care services, and education where families and young people are especially vulnerable
telephone helpline
information service
raise awareness

5. Key aspects of Specialist Advisor role
Condition specific, timely, responsive to need
Flexibility and independence
Short / long term interventions Nf1
Reconcile requirements of the NHS, NeuroFounation and patient/family preference
Networking skills with broad knowledge base
Interpret the role in meaningful way that makes a difference
Advocacy and liaison
Raising the profile of the NeuroFoundation

6. Map or Areas Covered by Neurofoundation SA Posts
North East and Cumbria
Susan Musson / Rachel Jones
Midlands
Carolyn Smyth
South West
Helen Tomkins
4. South of England
Carolyn Redman
5. Yorkshire and Humberside
Ruth Drimer

7. The Role of the Neurofoundation Specialist Advisorisos
Time to talk about NF1 and what it means
Support for those newly diagnosed
Ongoing contact if and when needed
Accurate and up to date information about NF1
Information about other organisations that may be able to help.
Acting as a contact point for health, education and social services
Guidance on education problems, including talking to teachers
Accompanying patients to clinic appointments

8. Role of the Specialist Advisor within a clinical setting
To provide a link for the family between hospital and home
To ensure patients and children have understood the consultation and the plan
Enable access to non “medical” services
Highlight school issues
Access psychology help/services
Access social services and other third sector providers
Offer continuity
Consider the needs of affected adults (attending paediatric setting) where no NF1 service

9. Some Members of the Wider MDT
NF1 Service
Wider Genetics Team
Paediatric Oncologists
Plastic Surgery
Sarcoma Team
Ophthalmology
Hospital and Community Paediatrics

10. Liaison with Nationally commissioned complex Nf1 service
Run Local clinics Adults and Children
Referral from these clinics into complex Nf1 service in Manchester or London
Run satellite clinics for complex service so that people can be seen closer to home
Access to latest developments, meetings, updates and teaching sessions

11. National Neurofibromatosis complex centres
North - Manchester – St Mary's Dr Sue Huson and Professor Gareth Evans
South – London – Guys Hospital – National Lead is Professor Rosalie Ferner

12. Uncomplicated NF1? Variable and unpredictable condition
Ready availability of information via internet (Good and Bad)
Cosmetic impact
Learning and behaviour patterns
School experience
Impact on confidence
Social difficulties

13. We are there for you
Adaptive service to meet the requirements of each individual
Holistic care, looking at the individual as a whole
Aim to make things a bit easier
Aim to make a difference

14. National Helpline and Telephone Consultations
Ruth Drimer
Rosemary Ashton (Neurofoundation)
Available Tuesdays and Wednesdays