Additional information concerning Coronavirus (COVID-19) for people diagnosed with Neurofibromatosis
We’re aware that COVID-19 is causing a lot of uncertainty for many and here at Nerve Tumours UK we are fully dedicated to the health and well-being of our NF community, and as such issues, the following information as the outbreak has now started to impact our community.
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.
For governmental guidance on social distancing and shielding for everyone in the UK and the protection of older people and vulnerable adults click the button below.
Those in the high-risk groups will have received or will receive a letter from the NHS if they need to stay at home and shield.
Covid 19 Vaccination: Contact your GP for any questions, vaccination schedule and specific processes in your area.
You will find further Information for shielding and protecting people defined on medical grounds as extremely vulnerable from COVID-19 here
We understand that this is a very stressful time for many people, and it may take longer for you to contact your local NF service. This is is because many of our doctors and nurses around the UK are being redeployed to help with Covid 19 medical care and vaccinations. Please do not worry, we are here to help.
Our Helpline is open on Monday & Wednesday 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.
In addition to our health, 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.
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 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 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
The 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.