Insights into the work of our support specialists from Mel Murrell
21 August 2019
Insights into the work of our support specialists from Mel Murrell
My name is Melanie and I am one of the two Support Specialists for the West Midlands region. I am employed by the Clinical Genetics Department at Birmingham Women’s Hospital, but my role is part funded by the charity. I can’t believe I’ve been working for Nerve Tumours UK for a few years now – it’s gone so quickly. I work two days a week, but it varies from week to week which days they are. That’s part of what I like about this job – the flexibility of it. I am extremely lucky to be working alongside Carolyn Smyth, who has lots of experience. She has spent the last year sharing all her knowledge with me. I am really enjoying my new role and enjoy the variety that the job brings. I have been able to support lots of families in a variety of different ways.
My favourite part of the job is going into schools to raise awareness of Neurofibromatosis and to advise the staff how they can support the children and families with Neurofibromatosis. I hadn’t realised that the West Midlands was such a big area, which is why Carolyn and I are in the process of evolving our roles so that we can cover the 6 counties more efficiently. I am going to be covering Warwickshire, Herefordshire and Worcestershire, whilst Carolyn will be covering Staffordshire, Shropshire and the West Midlands. My role involves looking after children and adults with NF1 and NF2. I attend the NF2 clinics for adults and children that run throughout the year. The Adult NF2 clinic is based at the Rare Diseases Centre at the Queen Elizabeth Hospital and they are held once every other month. The Children’s NF2 clinic is held at Birmingham Children’s Hospital and they are held 3 times a year. The NF1 clinics are not as structured, so I try and see patients when they are seen here in the Genetics Department. I have also attended an NF1 clinic in Stoke with Carolyn.
– Mel"I have spent lots of time over the last year speaking to GPs who do not understand the condition."
It still amazes me how many people have never heard of Neurofibromatosis. I have spent lots of time over the last year speaking to GPs who do not understand the condition and informing them of the implications that this condition has for their patients. I also have informed lots of friends and people who I meet about the conditions, as raising awareness of Neurofibromatosis is so important.
Filter News
![](https://nervetumours.org.uk/images/made/images/common/research_images_370x280_800_600_s_c1.jpg)
CAR Research visible difference experiences during recruitment
Research participants required, find out more and take part
Read More![](https://nervetumours.org.uk/images/made/images/common/NF_Academy_group_shot_3_370x280_800_600_s_c1.jpg)
NF Academy 2023 - Ella’s Blog
Ella, who has NF1, attended the week-long 2023 NF Academy in Portugal, meeting young adults with NF from all over Europe
Read More![](https://nervetumours.org.uk/images/made/images/common/Sadali__Sanjana_370x280_800_600_s_c1.jpg)
University of Manchester Research
Read about the latest PHD research, involving Nerve Tumours UK, at the University of Manchester
Read More![](https://nervetumours.org.uk/images/made/images/common/Manchester_Uni__NHS_logo_370x280_800_600_s_c1.jpg)
New Research Study for Children and Young People with NF1
Find out more about the study and how you can participate here
Read More![](https://nervetumours.org.uk/images/made/images/common/national-cancer-institute-bwMhq_itmMU-unsplash_370x280_800_600_s_c1.jpg)
Neurofibromatosis Type 2 name change
The new name for Neurofibromatosis Type 2 is NF2-related-Schwannomatosis (NF2)
Read More![](https://nervetumours.org.uk/images/made/images/common/Jensen_1_370x280_800_600_s_c1.jpg)
Jensen’s NF1 story
Stuart describes Jensen's first days post birth, subsequent diagnosis of NF1 plus his & wife Claire's hopes for his future
Read More![](https://nervetumours.org.uk/images/made/images/common/TSL_group_fundraising_370x280_800_600_s_c1.jpg)
TSL’s Charity of the Year
Specialist Nurse Tracey Kenyon launches TSL’s corporate funding to introduce NTUK & welcome guest of honour, 2 year old Evie
Read More![](https://nervetumours.org.uk/images/made/images/common/article_preview_image_370x280_800_600_s_c1.jpg)
Online – Accessibility – We have the tools to help!
The NTUK website has accessibility tools to give you easier access to online & digital content
Read More![](https://nervetumours.org.uk/images/made/images/common/kristine-wook-bZL9bLAZa5I-unsplash_370x280_800_600_s_c1.jpg)
My life with Pheo
This story, written by someone with NF1, describes symptoms leading to a phaeochromocytoma diagnosis
Read More