Nurse’s Conference 2020
24 June 2020
This week we had our yearly specialist NF nurses meeting with members tuning in from around the UK virtually via zoom. In attendance were Carolyn Smyth, Samantha Gaden, Helen Tomkins, Kirsty Bready, Rachel Jones and Melanie Murrell.
The meeting was an opportunity to gain valuable insight from all our nurses on their work and how the Covid19 pandemic has impacted them. Adjusting to coronavirus presented some big challenges not least, facing problems with new technologies and integrating them with current practices. The nurses work moved virtual; with clinical assessments happening over the phone or on virtual clinics – which presented new obstacles identifying symptoms and giving the correct support. All in all the feedback by those affected with NF was positive on the help and support received.
Our nurses also took on extra responsibilities including working on the extended helpline services, which was extremely busy at the beginning of the crisis. They are now all looking forward to having face to face appointments with patients, which will slowly start over the next few weeks – following governmental directives.
Their continuing efforts to take care of those affected by Neurofibromatosis throughout the pandemic did not go unnoticed. Our NF community showed their appreciation every week and our nurses are very grateful for the support & thanks the community showed them.
Filter News
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Mary Thomas wins Specialist Nurse of the Year 2019!
Have a read about the Guy's and St Thomas' Celebration of International Nurses Day here
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Luke and his NF Ninjas
Have a read of Luke's story of growing up with NF and how he plans to bring his chidren up proud of their NF as well.
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Stannington Community Association’s Easter Fête
Stannington Community Association's Easter Fête was a success! Read about this years superb event here:
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London Marathon 2019: 26 hard miles for 26,500 people affected
Thank you so much to all our incredible Marathon runners for going the extra mile (or 26)!
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Take a look at our new YouTube Channel
Take a look at our new YouTube channel and how to subscribe here
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Meet Pearl
Pearl Kelly is 22, and has multiple complex problems caused by her NF1. Here she explains her outlook on life
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Meet Joanna
Joanna is a lecturer in Mitochondrial Genetics at Newcastle University, she recently ran the London Marathon. Meet her here
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New Research Into Appearance Altering Conditions
Maia Thornton PhD is looking for both parents and professionals who care for someone with an appearence altering condition
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Adam’s Story
Adam has NF1 yet is still one of the most active and athletic people in the UK. Read about his fascinating story here:
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