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Statement by Samantha Gaden our Specialist Neurofibromatosis Nurse UK

15 April 2020

I am the Specialist Neurofibromatosis Nurse covering the North West region one day a week for Nerve Tumours UK.

I am currently unable to partake in some of my ‘normal’ duties such as supporting the doctors in our NF clinics, attending school meetings and anything that involves face to face. My work is reorganised to my home office continuing to support individuals and families via calls and email whenever possible. Initially there was an increase in my calls, particularly about health problems and shielding with NF Type 1. Those affected were anxious and naturally very concerned as the crisis is a new and never experienced situation for everyone. I realised that patients found it really helpful having someone available and hearing a voice at the end of a phone to ask questions and get reassurance and advice.

I also had the opportunity to work on the Nerve Tumours UK helpline, to support the charity to offer this well-established service covering more days due to a call increase related to the current crisis. Now in my second week on the helpline I have enjoyed talking to people from different parts of the country, speaking to new patients and realising the importance of our support services throughout the UK.

I will continue working with the necessary restrictions and will  participate on the helpline until times allow us to go back to delivering our normal medical service again, until then we are all in this together to support the NF community.

This is how the current situation has affected me on my day to day life. I go out once a day to take our beautiful border collie for his walk. We all need fresh air to clear our minds and stay healthy. I have finally managed to do jigsaw puzzles that have been in cupboards for years and also completed some of those jobs you just never usually get round to doing. I stay in touch either via social media, text or calls with those closest to me my friends and family. Those people you keep meaning to call, however, are usually as busy as I am with everything, it never quite happens. I guess this is some reality that never changes.

Please all keep well, stay in and stay safe – please look out for the Nerve Tumours UK Help section if you need any information on the current crisis.

As always I am very proud to be a nurse working within the NHS and for Nerve Tumours UK.

To keep our service intact and to move forward when this crisis is over, we need your support now, more than ever. We have been trying to think of inventive ways to fundraise whilst stuck indoors, so why not join our "Big House Challenge!" 

There is always somewhere that is in need of some spring cleaning....a room, cupboard, old coats, old bags, etc. You are bound to find some loose change...so why not donate it to Nerve Tumours UK, on the link below!

As the saying goes, "Every little helps!" Help us to continue helping you, our community.