First Specialist Neurofibromatosis (NF) Nurse for Wales
06 January 2021
Nerve Tumours UK are delighted to announce their first ever Specialist Neurofibromatosis (NF) Nurse for Wales, to be based at the University Hospital in Cardiff.
Helen Swann will have a very wide remit, covering the whole of Wales, but will work closely with the charity’s Specialist NF Nurse, who is based in Liverpool, and already sees many patients from the North part of Wales.
Helen qualified as a registered general nurse in 1985 and then moved into midwifery for 16 years before becoming a health visitor in 2006. She has nursed, supported and educated families and children with a diverse range of illnesses and conditions in hospital and in the community throughout her career, seeking to initiate change and improve health wherever possible. To further complement this, she has also completed an MSc, which involved an in-depth study of children’s developmental assessments.
Are you, or is anyone you know in Wales affected by Neurofibromatosis, in need of the service and wish to contact Helen. If so please register here:
Karen Cockburn, Charity Director, Nerve Tumours UK, said,
“I am absolutely delighted to welcome Helen to the team. This has taken several years of negotiation and organisation, and I would like to offer my gratitude to The Morrisons Foundation, who are sponsoring this post, and to Professor Jean White, the Chief Nursing Officer for the Welsh Government, who has been instrumental in helping to get this proposal up and running, as well as The University Hospital for agreeing to house the post. I now hope the people of Wales will receive the support they both deserve and need.”
Helen will start working with Jennifer Gardner, Consultant Geneticist at the University Hospital, from January 2021, to enhance and expand the support network for families and patients with Neurofibromatosis throughout Wales.
Helen will join a UK wide network of Specialist NF Nurses who are based within NHS trusts. Nerve Tumours UK funds a network of now 10 nurses in position across the country. Demand for our services has increased dramatically over the years and specifically since the onset of Covid-19. Further escalation is anticipated post lockdown due to increases in both loneliness and poverty having an effect on general and mental health. We are immensely proud to provide this support and service in Wales. The importance and value of the network is demonstrated every single day in the unique work of the team with individuals, families, medics, schools, other voluntary organisations and a wide range of other associated professionals to improve the every day of those affected with NF.
Filter News
Oliver’s Blog
Oliver Bromley shares some personal experiences of visible difference, and how education and kindness can reduce stigma
Read MoreEllen’s Story
Read Ellen's story, how she recovered from 'radical surgery' and why she's raising funds for NTUK.
Read MoreCelebrating Trustees Week
It's National Trustee Week: Meet the people who keep NTUK moving.
Read MoreMen’s Health Month
We're making sure that men with NF are prioritising their health, both in and out of the workplace.
Read MoreIrfan’s Story
Irfan discusses his NF journey, how he transformed uncertainty and isolation into community and understanding.
Read MoreKelly’s Story
Find out how Kelly discovered her confidence after overcoming testing years at school and college.
Read MoreAwareness Walks
Raise awareness with an organised walk within your community. We've put together some pointers to help you with planning.
Read MoreMeena’s Awareness Raising Coastal Walk
NTUK trustee Prof. Meena Upadhyaya treks the Welsh coast to raise awareness of NF and rare diseases.
Read MoreBreast Cancer in Neurofibromatosis Type 1
Professor Gareth Evans takes us through a summary of the current research around the links between NF1 and breast cancer
Read More