Nerve Tumours UK
Working for the Neurofibromatosis community
Nerve Tumours UK funds a unique Specialist Support Network for the 26,500 plus, children and adults, diagnosed with Neurofibromatosis (NF), one of the most common neuro-genetic conditions, that causes tumours to grow on nerve endings, with many associated medical issues. A predominantly community-based service, comprised of regional Specialist NF Nurses and Advisors, a National Helpline, a fully integrated and accessible website, information days, medical guidelines and leaflets. We offer both medical and non-medical advice and support, not just in clinics, but in schools, in the workplace, navigating the welfare system, and acting as advocates in tribunal and legal cases. These specialists are highly qualified medical professionals and therapists and link with the many other professionals involved in the care of anyone with NF.
Families affected by NF contact the team for a wide range of reasons as it is a very complex and varied condition. One of our most important services is a Schools Advisory Service for teachers and parents of children with NF, who are experiencing difficulties at school. Over 60% of patients will have learning disabilities, yet support is often non-existent or inappropriate, which can make the child’s experience at school difficult and unproductive. The Specialists link with the child’s associated professionals (Occupational Therapists, Physiotherapists, Speech & Language Therapists and Child & Adolescent Mental Health Teams) and give advice on how to help these children. Likewise, in the workplace, we offer an advisory service for employers, who will not have heard of Neurofibromatosis and will not be aware of how the condition may affect an individual. We can host training sessions for HR and senior managers. Adults may also need help with information on benefits, how the benefits system can help them, and how to access and apply for such information and support. Our services support the affected individual and their family from the first diagnosis to education and transition into the workspace.
We are a “one-stop-shop” for people with NF and each member of our Network currently reaches out to between 500-3850 families per year, so thousands of families affected by Neurofibromatosis have a better quality of life because of this medical, practical and emotional support. New referrals come along each week, yet without our Specialist Support Network, there is no support for these patients elsewhere. We anticipate that for each person with NF that we help, we also help on average 8 members of their wider network thus helping hundreds of thousands.
People diagnosed with NF are both vulnerable and often isolated. NF is not well understood by most of the medical profession, most GPs will have only a handful of patients on their list, so their experience is likely to be limited and non-medical professionals may have little or no knowledge of the condition. Our team will link individuals to other resources thus helping to achieve some sense of control in a situation that feels potentially threatening and unsafe.
The charity, formed with a membership base, was established 40 years ago by a group of parents, each having a child diagnosed with Neurofibromatosis. Today, the Board of Trustees continues its links directly to the membership base, as it is partly composed of people with the condition, those with a family member diagnosed with NF, and medics specialising in NF. The core aims of the charity were and still are, driven by the needs of the NF community, particularly and primarily for those diagnosed with the condition, but now also by the needs of the medical profession, who we also advise and support.
We are overseen by a Medical Advisory Board (MAB), comprising fourteen leading experts in the NF field, and chaired by the leading expert in Europe, who is also named in the top two in the world. Steered by the MAB, our service continues to meet the community's ongoing needs as well as embrace new initiatives and ideas as medicine and research progress. Our services are consistently evaluated through patient feedback, and consultation with medical professionals including the four English Specialist Centres for NF.
