Helpline 07939 046 030

Support Specialists Challenges and Ambitions

27 March 2019

Support Specialists

Caroyln Smith

Carolyn Smyth is the new National Lead Nurse at  Nerve Tumours UK. She explains her plans for the role.

I have been a Specialist Advisor since 2000. Unbelievably, I will have been in post for 19 years this November!
I had completed a Genetic Counselling course at Great Ormond Street and I remember applying for my current job and thinking I will have a look through my course work and read up on NF.... there was no mention of it! I looked at the charity website and saw the often quoted NF1 strapline
“Most common, least known genetic condition”. Things have improved  since then, but there is still plenty of work to be done, raising awareness  and improving the lives of those with this condition.

I am very fortunate to have been working with Mel Murrell for the past year (Mel recently featured in the Nerve Tumours UK Magazine). Just to re-cap, I cover Staffordshire, Shropshire and West Midlands, whilst Mel covers Warwickshire, Worcestershire and Herefordshire.

In April, I am looking forward to starting the National Lead Nurse Role at Nerve Tumours UK.

I will split my time between my work as an NF1 Support Specialist based in the West Midlands Clinical Genetics Department, answering the NTUK helpline, and carrying out my role as Lead Nurse.

As with all our jobs,  I will be flexible to cover commitments to NF Clinics, school visits and so forth. It’s an exciting time and there is much work to do!

The challenges in this role are as great as the rewards. I have a special interest in education. I have experienced first-hand what it is like to have a child with a diagnosis of ADHD and Asperger’s. This has given me an insight into the difficulties of negotiating the EHCP (Educational Health Care Plan) and a myriad of other issues associated with Special Needs Education.

Working with families and individuals with NF is a privilege, they continue to inspire me after all these years. If you gave me a magic wand, the first thing I would do is provide clinics and support for adults with NF1 who do not fit into the complex NF1 clinic, but desperately need knowledgeable local NF advice.

"Working with families and individuals with NF is a privilege, they continue to inspire me after all these years"

– Carolyn

Rachel Beaufort- Jones

Rachel Beaufort-Jones is the Support Specialist for the North East and Cumbria. She writes about its challenges.

My name is Rachel Beaufort-Jones and I am a Neurofibromatosis Nurse Specialist.

On Tuesday to Friday I work in Newcastle, when I support and advise individuals who have the condition within the geographical area of the North East and Cumbria. On Monday, my role as an adviser extends nationally and internationally when I work for the Nerve Tumours UK helpline. This is an incredibly important role to fulfil, as for many areas of the UK who are not so fortunate to have access to a Specialist Nurse, the helpline provides specialist support which people would be otherwise lacking within their geographical area.

During the five years I have worked with individuals who have Neurofibromatosis Type 1, I have found that the condition is not understood by the wider community and this includes many health professionals. As such, specialist support is imperative, which in turn improves health outcomes and the independence of those who would otherwise be struggling with managing their condition.

I feel very fortunate to have been given this role as I have the pleasure of connecting with so many remarkable individuals!

"I feel very fortunate to have been given this role as I have the pleasure of connecting with so many remarkable individuals"

– Rachel

Filter News

Filter by Date

Share your Covid-19 Story

Help us understand the positive and negative impact of Covid19 on you, your loved ones & carers.

Read More

We’re Here for You, Our NF Community.

A big thank you from Karen our Charity Director - your support has been amazing!

Read More

Global Genes LIVE!

Join Global Genes September 15-25, 2020 at Global Genes LIVE! A RARE Patient Advocacy (un)Summit.

Read More

Shine A Light on Neurofibromatosis now streaming on The Disorder Channel

Find out how we are bringing NF Awareness to people's homes

Read More


Let's get active to support the community

Read More

Best Film Nomination “Shine A Light on Neurofibromatosis” PM Society Digital Awards

Join the awards ceremony virtually this Wednesday 16th September

Read More

Centre for Appearance Research NF Survey

Find out how you can take part in CAR's online survey about NF parenting and caring experiences.

Read More

Act it Out Prototype App Trial

If you are experiencing difficulties related to NF & 'Visible Difference' - find out how you can take part

Read More

The Virgin Money London Marathon Goes Virtual

Sign up for your Virtual London Marathon experience Sunday 04.10.2020

Read More