One of the areas we are most proud of is our network of Support Specialist who are based within NHS Trusts around the UK.
All our Specialists are highly qualified professionals with a background in either nursing, social work or occupational therapy. The network has grown and developed both in terms of size and knowledge of Neurofibromatosis.
The value of the network is demonstrated every day in the unique work of the Specialists with individuals, families, health professionals, schools, other voluntary organisations and a range of other professionals.
Support Specialists Outreach Map
To see if there is a Support Specialist in your area, please see the map below or call 020 8439 1234.
Carolyn qualified as a Registered General Nurse in 1986 and is based at the Birmingham Women’s and Children’s Hospital NHS Foundation Trust. Carolyn has a wide variety of experience including high dependency, community and research nursing. Carolyn has worked in genetics since 1994 on a project with Birmingham University and Diabetes UK trying to identify genes for Type 1 Diabetes. Carolyn started working for the charity in 2000 and has a particular interest in learning difficulties associated with NF1.
Ruth’s background is in oncology, but it was in her last job as a lymphoedema practitioner that she first came across NF1 and saw the multiple issues that people can face with this condition. She is based in Leeds and works within the regional genetics service boundaries supporting clinics and liaising with other specialists. She has now been working as a Specialist Advisor for the charity for the past 5 years and hopes to continue to do so for many years into the future.
Sam qualified as a learning disability nurse in 2001, she has been community-based since then, working with children and adults in many different specialities. Sam also has substantial experience working as an LD nurse within CAMHS. Furthermore, Sam will be working with adults and children with NF1 and NF2. In addition to being an NF nurse, she is also an ASD specialist practitioner at Alder Hey Hospital – assessing autism in children and young people.
An Occupational Therapist who has completed post-graduate training in Family Therapy and Cognitive Behavioural Therapy, Helen always looks to provide holistic care for her patients. She is based at Derriford Hospital in Plymouth and supports people with either an NF1 or NF2 diagnosis in the counties of Devon and Cornwall.
Rachel Beaufort-Jones joined us in October 2013. She has a background in Paediatric Nursing and spent many years working in Critical Care. Throughout her clinical experience, she has nursed, supported, counselled and educated children and their families with a diverse range of diseases, disabilities, life-limiting and life-threatening illnesses. Rachel completed an MSc at Newcastle University, which involved an in-depth study of chronic conditions. Rachel works Tuesday to Friday and is based at the Genetics Institute at the Centre for Life in Newcastle working together with Rebecca Rennison. She also works on a Monday for the charity's helpline.
Rebecca joined the charity recently in 2018. She joins Rachel at the Genetics Institute at the Centre for Life in Newcastle.
Melanie Murrell currently works at Birmingham Women's Hospital NHS Foundation Trust, working with adults and children who have NF1. Melanie wanted to focus on her career and wanted a new challenge that she thought could apply all her knowledge and experience to that she has gained over the last 23 years.