The Neuro Foundation is one of the only resources for people with NF in the UK. Our Specialist NF Nurses are one of the key reasons we exist.
A new diagnosis of Neurofibromatosis Type 1(NF1) can be devastating for a family. Most will not have heard of NF before diagnosis and will not know where to get help. The Neuro Foundation provides the only support service in the UK for anyone with NF1, and we play a crucial role providing information on NF2, Schwannomatosis and Legius Syndrome.
What is a Specialist NF Nurse?
Our specialists are experts on Neurofibromatosis, all of whom are highly qualified professionals with a background in nursing, social work or occupational therapy. They all work from a hospital base in their region, and collaborate with many other professionals involved the care of patients with NF.
What can they do to help me?
Our specialists understand that for every one diagnosis, as many as 8 people can need support or guidance. Parents, Grandparents, Siblings, Teachers, Care workers and non-medical professionals – even GP’s and medical staff may have enquires to help them provide better care.
Image: The network of people surrounding an individual with NF also require support.
Our NF Nurses are available to offer support to anyone living with NF. They provide the following support - if the support you need is not listed, have a chat with them anyway.
- time to talk about Neurofibromatosis and what it means.
- support for those newly diagnosed or in times of acute need for example, when facing difficult decisions.
- on-going contact if and when needed.
- accurate and up to date written information about NF1 and NF2.
- information about other organisations that may be able to help.
- acting as a contact point for health, education and social services to ensure that the best practical help and support is available.
- guidance on education problems, including talking to teachers.
- providing information about events for children, young people and adults.
- home and school visits.
- accompanying patients to clinic appointments and help in coordinating appointments if necessary.
- helping patients and their families to explore social support and activities that are available in their area.
Is there a Specialist NF Nurse in my area?
Our Specialist NF Nurses are listed by region below. However, if you live in area not covered by one of our Nurses, our National NF Helpline is available to anyone in the United Kingdom every Tuesday and Wednesday from 9am -5pm. Call our helpline on 07939 046 030.
Our current Specialist NF Nurses are:
Leeds and Yorkshire
Ruth joined the team of Specialist NF Nurses in April 2014. Ruth's background is mostly in Oncology, providing care for people going through chemotherapy and radiotherapy treatments as well as working as a research nurse supporting patients going through clinical trials. Before joining the team, she was a specialist nurse in Lymphoedema, providing physical and psychological support to patients.
North East and Cumbria & Teeside
Rachel Jones joined us in October 2013. She has a background in Paediatric Nursing and has spent many years working in Critical Care. Throughout her clinical experience she has nursed, supported, counselled and educated children and their families with a diverse range of diseases, disabilities, life-limiting and life threatening illnesses. Rachel recently completed her MSc at Newcastle University, which involved an in depth study of chronic conditions. Rachel works Tuesdays and Thursdays and is based at the Genetics Institute at the Centre for Life in Newcastle working together with Susan Musson.
North East and Cumbria
Susan joined the charity in 2011 and is based at the Genetics department at the Centre for Life in Newcastle. A Paediatric and Adult nurse, Susan has an extensive background in community paediatrics, setting up a respite service for children with complex needs and working as a paediatric nurse specialist for children with Diabetes. Looking after NF1 patients, she now works with The Neuro Foundation and links with the Manchester complex team. Susan runsNF1 clinics at Newcastle and Teeside and links into paediatric clinics in South Tyneside and Sunderland. She also organises complex NF1 clinics with Dr Susan Huson in Newcastle, Teeside and Cumbria.
Based in Southampton, and covering Hampshire, Dorset, W.Sussex, and the Isle of Wight, Carolyn has been a Specialist Advisor since 2003. Her background is in both Adult and Paediatric Nursing as well as genetic counselling. She works with The Neuro Foundation and links in with a number of Paediatric clinics in Hampshire. Carolyn also works as a Clinical Nurse Specialist with the National Specialist Services for NF2 and links in with the Oxford Centre.
West Midlands region
Carolyn started work with The Neuro Foundation 10 years ago and is based in Birmingham. She is an experienced nurse, having previously worked as a Research Nurse and Community Nurse, as well as in a Poisons Unit and in genitourinary medicine. She covers a vast area of six counties including Staffordshire, Shropshire, West Midlands, Warwickshire, Herefordshire and Worcester.
Devon and Cornwall
An Occupational Therapist who has completed post-graduate training in Family Therapy and Cognitive Behavioural Therapy, Helen always looks to provide holistic care for her patients. She is based at Derriford Hospital in Plymouth, and supports people with either an NF1 or NF2 diagnosis in the counties of Devon and Cornwall.
Connect your social media account to Thunderclap to help us to shout about NF on World NF Day 2017