One More Nurse

by Nerve Tumours UK
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Thank you for continuing to support Nerve Tumours UK.

 

As you know, Nerve Tumours UK continues to fund 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. This is a predominantly community-based service, offering both medical and non-medical advice and support, not just in clinics, but in schools, in employment, in 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. The network also plays a key role in educating the associated medics, involved in the care of someone diagnosed with NF.

We are a "one-stop-shop" for people with NF and each member of our network currently reaches out to between 200-3800 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 support for these patients from 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.

The network currently funds twelve community based nurses' posts, and we are in negotiations to fund two further posts in different regions of the UK. In October, we also extended the operational hours of the National Helpline to three, from two, days per week. Demand for our services, especially from regions where we do not yet fund a nurse's post, is growing rapidly due primarily to the increased wait times in both primary and secondary care.

iNForm

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 including school visitis to educate the school itslef about Neurofibromatosis are possible.

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.

Links:

Share on Twitter Share on Facebook
#OneMoreNurse
#OneMoreNurse

Dear Friend,

 

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 in all 4 nations of the UK - currently we have increased our specialist advisor portfolio to 12. 

 

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.

 

iNForm

 

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. 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 when diagnosed with NF, the support in the day to day life and advise on medical treatment. 

 

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.

Links:

Share on Twitter Share on Facebook

Dear Friend,

 

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.

iNForm
 

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.

Links:

Share on Twitter Share on Facebook
#OneMoreNurse
#OneMoreNurse

Dear Friend,

 

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.

 

iNForm

 

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.

Links:

Share on Twitter Share on Facebook
#OneMoreNurse
#OneMoreNurse

Dear Friend,

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 in the current situation of crisis. And now the news that everyone is wating for. We have a new nurse working for us in Southampton covering the Wessex region. Welcome Tracey Kenyon to the team of Specialist Neurofibromatosis Nurses 

Tracey initially trained as an adult and paediatric nurse and Health Visitor. After acquiring a range of experience in paediatric nursing she moved into Health Visiting before moving into child development and disability services, initially as a Specialist Health Visitor and latterly as a Nurse Consultant.

Since then, Tracey has been involved in teaching and working for the DWP, but COVID and working from home, has made her realise she wants to return to working with people, the NF community and is now based at Wessex Clinical Genetics Service - Southampton.

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.

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.

Therefore, over 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. 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. 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. 

Links:

Share on Twitter Share on Facebook
 

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Nerve Tumours UK

Location: London - United Kingdom
Website:
Facebook: Facebook Page
Twitter: @NerveTumoursUK
Project Leader:
Markus Bell
London, United Kingdom
$3,482 raised of $56,087 goal
 
58 donations
$52,605 to go
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