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. We now have 11 nurses across the country working and supporting the Neurofibromatosis Community – The last 2 years specifically have shown us what difference a nurse makes in the day-to-day live of NF patients. Now being back to our normal operations we had 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.
A small slice of normality returned at the end of October, when we were able to host our annual conference, in-person... almost!
We were delighted to meet all four of our new nursing colleagues, in person, rather than via Zoom, and to learn how their broader and past experiences can help us to expand our remit and contacts. We are extremely proud that the charity and regional support team carried on with business as usual, as best we could during the last couple of years, and of the feedback and support that they continue to provide for our community.
The two-day event has two distinct threads.
Day one centered around meetings between the team of regional nurses & advisors with the Head Office, and Members of the Board of Trustees. We discussed a wide range of issues - what we have learned over the last two years; the advantages and shortfalls of this new virtual world we inhabit; we looked at how we can improve our internal mechanisms; how the respective teams can support each other better; and how we can improve and roll out our services even further.
Day two was very much focused on the medical side, and the team of nurses and advisors were left to discuss all things medical.
It is an extremely important event for the charity, as a whole, as it is the only time each year when we can set aside real time to come together, concentrate on what needs doing and forge a way forward, together.
And now to us - a short overview on NTUK
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 workplace, 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 advice. School visits to educate the school itself about Neurofibromatosis are possible. Now that the school holidays are imminent get ready for your child to 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.
Stay tuned for further positive news over the next months and support us. We are currently in conversations to widen our network even further. 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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