Meet Carolyn

Specialist NF Support Network

Carolyn Smith

I have been a Specialist Advisor since 2000. Unbelievably, I will have been in post for 24 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 Nerve Tumours UK 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 last few years. I cover Staffordshire, Shropshire and West Midlands, whilst Mel covers Warwickshire, Worcestershire and Herefordshire.

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

As with all our jobs, I have to 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.