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.
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Oxford’s John Radcliffe Hospital celebrate NF2 Awareness Day
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Care Quality Commission survey
Take part - if you are from an ethnic minority, have a long term physical condition & live in selected SW London boroughs
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CAR research family planning decision making
This CAR UWE research explores family planning & decision making for people with a visible difference which can be inherited
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Shine A Light 2024
The Shine A Light 2024 campaign had 133 buildings around the UK & the Republic of Ireland lit up in blue!
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Guidance on sudden hearing loss in NF2-related Schwannomatosis (NF2-SWN)
Symptoms, diagnosis & treatment of sudden hearing loss, from Juliette Buttimore, Nurse Practitioner NF2 Service Addenbrooke's
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NF2 Day 2024 by Emily Owen
A reflective poem for World NF2 Day, to celebrate people living with NF2
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Connor’s NF2 story
Connor's mum Tracy's maternal instincts proved invaluable when fighting to get Connor's symptoms investigated
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Jo’s Shine A Light Family Fun Day
The family fundraiser was supported by Dr Shruti Garg, member of the Nerve Tumours UK Medical Advisory Board
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Erin’s 24 hour charity live stream
Erin has NF1 and is raising awareness with a 24 hour live charity stream to Shine A Light on NF
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