For those that have donated and supported us over the recent months we are more than grateful. Please spread the word on the importance of our nurses and specialist network specifically as we were still operating the charity from our home office, gradually returning on Monday 19 of July to go back to normal. We now have 9 nurses across the country working and supporting the Neurofibromatosis Community – help that was urgently needed over the last year throughout the epidemic. Meetings online or in person increased over the period as it was more difficult to see your specialist or to travel and leave your local area or home for those affected. We will continue our service and are looking into further recruitment of specialist nurses as it has shown us what difference a nurse makes in the day to day live of NF patients. So please continue to support us and let’s hope the soon to be new normal will give us the chance to include some positive learnings, i.e. the use of virtual nurse meetings and new technologies implemented as part of the service.
As you know 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, and with many associated medical issues. A predominantly community-based service, offering both medical and non-medical advice and support, not just in clinics, but in schools, in employment, 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.
We are a "one-stop-shop" for people with NF and each member of our Network currently reaches out to between 500-3500 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 such 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.
If you are in need of support at your work place, school, university or GP - please have a look at our iNForm program. I have attached the link below to the report. In the first instance you can download the information and register or contact us for direct help. One of our specialist NF nurses will be able to support you, write explanations and adivse. School visitis to educate the school itslef about Neurofibromatosis are possible. Now that the school holidays are imminent get ready for your childs start at school and register for the best help possible through our iNForm program
Families affected by NF contact the team for a wide range of reasons as it is a very complex and varied condition. People are often both vulnerable and often isolated, and are immensely distressed by the current situation, as some of their complications make them more susceptible to catching Covid-19. 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 past months, we have had no choice but to continue operating on a business as usual basis as best we can, running up all usual core costs, whilst our income streams have been totally depleted. Both of the vacancies that we planned to fill in 2020 now have a nurse in place and they are well positioned now in their 6-month working. There is a nurse now covering the Welsh region. This is not where we want to stop as there are too many regions in the UK without access to the specialist service and our planning has already started and hopefully we will have reached the 10th nurse in the next months. Stay tuned for further positive news over the next months and if you can support us. We will continue with our aim to make every day better for those that have the illness. We hope for your continued support as the network is growing and your donations helped us to be able to do so.
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