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

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

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

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

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

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

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

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

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

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

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

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

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

National Helpline and Telephone Consultations Ruth Drimer ruth.drimer@nhs.net Rosemary Ashton (Neurofoundation) Available Tuesdays and Wednesdays 07866946334 www.nfauk.org