NF & COVID-19 (Coronavirus)
Additional information concerning Coronavirus (COVID-19) for people diagnosed with NF
We’re aware that COVID-19 is causing a lot of uncertainty for many. Here at Nerve Tumours UK, we are fully dedicated to the health and well-being of our NF community, and will share updates as given by the government.
People should check with their own doctors, if in any doubt, and we strongly recommend that you follow all Government & national medical guidelines during this period. You can download the information here.
NF & COVID-19 (Coronavirus)
How to stay safe and prevent the spread
Guidance on protecting people defined on medical grounds as extremely vulnerable
COVID-19 vaccination: guidance & resources for schools and parents
Covid 19 Vaccination: Contact your GP for any questions, ongoing vaccination schedule and specific processes in your area.
Most Vulnerable to be offered spring Covid 19 booster
https://www.gov.uk/government/news/most-vulnerable-to-be-offered-spring-covid-19-booster
If you have any questions, please contact your GP directly.
Hospital Contact
We understand that this is an ongoing stressful time for many people, and it still may take longer for you to contact your local NF service. Please do not worry, we are here to help.
Our Helpline is open on Monday, Wednesday & Friday from 9am to 5pm on 07939 046030.
On the other days of the week, the head office team can be contacted from 9am to 5pm on 0208 439 1234.
Outside of these hours, and if you think it is an emergency, please contact your GP, or go to your nearest A&E Department.
Face Mask Exemption Guidelines/Cards follow Governmental Guidance for further information
In addition to our health, and the aftermath of the last two years, many people are struggling because they are unable to work. Some may even have lost their jobs or have reduced income.
Please do have a look at these affiliated charities for further help and information.
Carers UK
Carers UK is there with support, information and advice for carers that might be affected by the corona crisis.
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Gov.uk
A range of extra support and measures will be in place to help workers, benefit claimants and businesses affected by coronavirus.
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Scope
Scope is a national disability charity that campaigns to challenge and change negative attitudes about disability and provides direct services. They will support you and your rights in these difficult times.
Visit Website
Turn2Us
Turn2us is a national poverty charity helping people when times get tough gain access to welfare benefits, charitable grants & other financial help – online, by phone and face to face through our partner organisations.
Visit Website
Stepchange
Stepchange provides a benefit checker to see if you may be entitled to make a claim. Encouraging you to contact your bank, landlord or anyone you owe money to, asking for payment flexibility at this time.
Visit Website
Mind
Coronavirus & your mental health information resources. If you're finding things hard emotionally right now, you're not alone. We're here to provide information & support.
Visit WebsiteThe Body & Mind Toolkit for Adults & Children
An online information booklet with links to Wellness and Sleep, Eat Well and Move Your Body More resources in the COVID-19 Wave 2 pandemic period for people who use Highly Specialised Services and their families.
This is a collation of resources, that groups and services across a number of trusts and organisations have already made available
In these difficult times of possibly losing contact with the outside world remember there different ways to stay active and socialise. Follow us on social media for further information.
Filter News
Meet Charmaine, Our New Specialist NF Nurse
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Olivia’s NF1 story
Olivia and mam Kelly share their NF1 story, highlighting school achievements and support from NTUK Specialist Nurses
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Eashan’s NF1 story
'Why Run'... Eashan was diagnosed with NF1 after losing his eyesight when he was 5. His mother Jen tells his story.
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2023 Awareness Campaign
Nerve Tumours UK have joined forces with RBH to raise awareness for a second successive year.
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Disclosing and explaining visible differences - CAR Workshop
Read more about the workshop, featuring additional guidance from Specialist NF Nurse Rebecca Rennison
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Jo Ward’s Avastin Blog
Jo Ward, CEO of NF2 BioSolutions UK, shares a blog about her son Oscar's Avastin journey
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Nigel’s story - Normal is as normal does
Nigel lived a normal life until age 47. The next 20 years took him from NF1 to NF2 to Schwannomatosis to mosaic NF2
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Meet Helen
Helen is the Specialist NF Advisor for Devon and Cornwall and is based at Derriford Hospital in Plymouth.
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Meet Rebecca
Specialist NF Nurse Rebecca is Lead Nurse, NTUK and is based at the Genetics Institute at the Centre for Life in Newcastle
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