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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New research into non-discrimination law
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NF1 research award first for UK consultant
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EDEN Study Progress Report
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Ella’s story
Have a read of Ella's story here. An uphill battle which we know she will turn around!
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Grace’s Story
Have a read of Grace's story and she overcame her insecurites surrounding her NF
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Helpful Charities
Find some of the other helpful charities that may be able to support you here
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