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.
"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.