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
![](https://nervetumours.org.uk/images/made/images/common/Northern-ireland-shave-offPage-Preview-800-x-500-px_800_600_s_c1.png)
“Charity Shave Off” for NF in Northern Ireland
Janice and her family recently held a charity shave off in Northern Ireland. Find out more about the event here:
Read More![](https://nervetumours.org.uk/images/made/images/common/blackpool-tower-blackpool-magic-conventionPage-Preview-800-x-500-px_800_600_s_c1.png)
Blackpool Magic Convention 2020
Find out more about the convention in aid of NTUK and how you can get involved here:
Read More![](https://nervetumours.org.uk/images/made/images/common/2019-reviewPage-Preview-800-x-500-px_800_600_s_c1.png)
Reflections on 2019
Check out our reflection on what we feel was an incredibly succesful 2019 for the charity:
Read More![](https://nervetumours.org.uk/images/made/images/common/helen-and-pauline-Page-Preview-800-x-500-px_800_600_s_c1.png)
Helen’s Story as told by her Mum Pauline
Due to her NF1, Helen has faced several struggles. Mum Pauline has openly shared her daughter's experiences with us here:
Read More![](https://nervetumours.org.uk/images/made/images/common/NicolaPage-Preview-800-x-500-px_800_600_s_c1.png)
Nicola’s NF2 Journey
Nicola creates her own YouTube videos to help promote NF2 awareness. Find out more about her NF2 journey here:
Read More![](https://nervetumours.org.uk/images/made/images/common/James-partidge-article-novemberPage-Preview-800-x-500-px_800_600_s_c1.png)
Making the Future of Work inclusive of persons with disability
Check out James' recent presentation at a conference in Geneva highlighting issues of "face equality" in the workplace
Read More![](https://nervetumours.org.uk/images/made/images/common/carolynPage-Preview-800-x-500-px_800_600_s_c1.png)
The Royal Society - A Quest for the perfect Human…? A debate on the implications of human genome editing
Find out more about the debate recently undertaken at The Royal Society here:
Read More![](https://nervetumours.org.uk/images/made/images/common/CARDesktop-1600-x-900-px-copy_800_600_s_c1.png)
Appearance Matters: Prof Diana Harcourt and Maia Thornton
Find out both Diana's and Maia's views on their work and the importance of their work for people with NF:
Read More![](https://nervetumours.org.uk/images/made/images/common/Jane-francesPage-Preview-800-x-500-px_800_600_s_c1.png)
Jane Frances
Here Jane Frances tells us how findings from psychological research can help parents and teachers of children with NF
Read More