Neurofibromatosis ((NF) is one of the most common neuro-genetic conditions. It can be life-limiting and destroys the quality of life. Our community-based specialist nurses provide vital support and advice, both medical and non-medical to patients, their carers, and their families. However, we do not have enough funds to cover the whole of The UK with regionally based nurses at present.
People diagnosed with NF can be vulnerable / isolated and are immensely distressed by the pandemic. Some of their complications make them more susceptible to catching Covid-19. NF is not well understood by most of the medical profession. GP's or Non-medical professionals may have little or no knowledge at all. Demand for our services increased dramatically, further escalation is anticipated post lockdown due to an increase in loneliness and poverty having an effect on general and mental health.
We need to expand our Specialist Support Network to reach all parts of the UK. We currently have seven regionally based nurses, but we anticipate we need ten more, each costing approx. 15k per annum. Help us to fund more nurses, so that everyone diagnosed with Neurofibromatosis in the UK has access to the services of a regionally based specialist nurse, and the chance of a better quality of life.
NF manifests itself in many ways and has many associated conditions, therefore impacting on many areas of people's lives, not just health. The specialist nurses take a lead role in liaison and advocacy with health, education and social services to support quality and continuity of care for those affected by NF. They help people to learn to live with their diagnosis and to equip them with the knowledge of when, where and how to seek help. The patient can enjoy a better quality of life, every day.