AMNET Meetings
AMNET holds meetings twice a year, usually at Addenbrooke's Hospital, which is considered a centre of excellence in the treatment of skull base tumours. We use these meetings as an opportunity to build community between our members and other attendees. It's also a great opportunity to share the latest news and research on Acoustic Neuroma and Meningioma. We host guest speakers with a variety of different experiences and relationships with support and treatment, who have provided information on many aspects relevant to people with a skull base tumour.
AMNET:
The Acoustic Neuroma and Meningioma Network
AMNET (The Acoustic Neuroma and Meningioma Network) is a registered charity, run by volunteers, which supports people who have been diagnosed with skull base tumours such as Acoustic Neuroma (Vestibular Schwannoma) or Meningioma.
We aim to offer members support during the process of their diagnosis and the subsequent management and treatment of their tumours. This will be a worrying time but many of our members have had their treatment, or continue under surveillance, and will offer their support and share their invaluable experiences.
We hold regular meetings, in person and online. Our members often find that meeting with others is a massive help to them, and their families, in managing symptoms and adjusting their lifestyles or with in their workplaces.
We have strong links with the multidisciplinary Skull Base Team at Addenbrooke’s Hospital, Cambridge, UK. Many of the team have spoken at our meetings and some are on our Advisory Board. Two of our members serve as ‘patient representatives’ to the Skull Base Unit Clinic 10.
Our membership is primarily based in the East of England, but as Addenbrooke’s Hospital is a centre of excellence for the treatment of skull base tumours, treating patients from around the UK and even the world, we have members across the UK.
Our History
AMNET was formed in 1996 when Alison Frank approached Mr David Moffat, Consultant ENT Surgeon and part of the team operating on Acoustic Neuromas in Addenbrooke’s Hospital, about the possibility of setting up a self help organisation. Her aim was that people diagnosed with an Acoustic Neuroma or other skull base tumours could talk to and receive support from someone else who shared the diagnosis and who had undergone surgery (the treatment of preference at that time).
The inaugural meeting was held at the Cambridge Hotel in Cambridge on June 1996. It was paid for and attended by Mr Moffat who invited all those who had undergone surgery to remove an acoustic neuroma at Addenbrooke’s Hospital . It was attended by around 50 people. A committee was set up and AMNET was born.
Since then members have attended meetings held at Addenbrooke’s Hospital two or three times a year. In 1997 we produced our first edition of AMNET News and have been producing newsletters at least twice a year since then.
We have also provided support to the many people who have contacted us by phone or email over the years, offering a listening ear, access to information and sharing experience.
AMNET Trustees & Volunteers
AMNET is a registered charity run by volunteers. Our Trustees and volunteers have a close relationship with one another alongside other members of the AMNET community. As a member you may encounter them at meetings, both in person and online and when reaching out for support it will be one of our volunteers that can offer advice or a listening ear. Learn more about them below:
Alison Frank
President
Alison was the founder of AMNET in 1996 and has been a Trustee ever since. She was Chairman until 2015 and has been the first line of contact for many people who have come to AMNET over the years.
‘I had surgery to remove a meningioma, thought to be an Acoustic Neuroma until removal in 1993. I have two grown up children, and I am a retired Primary School teacher, and enjoy family, gardening, reading, walking, doing crosswords and listening to music.’
Heidi Pratchett
Chair
I was diagnosed with an Acoustic Neuroma at the age of 38 initially believing I was having a sudden major stroke. The size and position required surgery to remove most of the tumour. I have Grade 5 facial palsy, single sided deafness and incomplete eye closure. I have vestibular physiotherapy and speech therapy. Speech therapy helps with my swallowing challenges and also facial palsy exercises. I have eye appointments and Botox treatment to assist my synkinesis. I use eye drops, ointments and tape my eye closed when I sleep. I have CROS aid and amplification equipment assist me at work. I feel I embrace what I face and use the experience to support others!
Alan Gosling
Elected trustee and appointed Treasurer in 2017.
I was diagnosed with an acoustic neuroma in September 2013 following an ENT referral to understand the reasons for my one-sided hearing loss. Since diagnosis I have been on ‘Watch and Wait’ where only a minor amount of growth has been noted and I have a CROS aid to manage the effect of my hearing loss. I am semi-retired Civil Engineer but still do some work as a Technical Consultant in the Water Industry. Outside of work I am the District Treasurer for Lowestoft District Scout Association.
Bronwyn Lummis
Secretary since 2017, Trustee since 2011.
Sadly I was diagnosed with an Acoustic Neuroma in 1994 which was devastating news to hear but after my surgery I had my facial nerve cut which meant going on to have a lot more operations to my face something which I didn’t expect! But then I heard about this AMNET group which started a couple of years later we were so pleased to have the help, support and friendship of everyone in this group and to feel you are not alone.
Alison Parkes
Trustee since 2021
I had my AN in 2012. I was just 31 with a toddler and 3month old baby. Due to its very large size and position, I had urgent surgery (16hours), within days to remove it. I am deaf on my right, have minor balance issues and a moderate facial palsy. I am under a specialist team for this and have had 3 eye surgeries. As you can see from my pic, I am well recovered, getting the most out of life again - back to playing netball, working as an NHS OT and enjoying a very busy and fun family life.
Steve West
Trustee since 2017
I joined AMNET back in 2005 after being diagnosed with an acoustic neuroma and was invited to attend one of the AMNET meetings so that I could meet and talk to ‘real’ people who had been diagnosed with the same condition as me. The speaker at this meeting explained radiotherapy treatment as an alternative to surgery which was one of the treatment options that I had been offered. Through AMNET, I try to offer people the same reassurance and practical (non medical) advice which was so helpful to me when I needed it most.
Stuart Cooke
Trustee since 2022
I was diagnosed with an 8mm Acoustic Neuroma in 2017. Initially, after diagnosis I was put on watch & wait but after a subsequent scan revealed some growth, I was advised to have it treated. I opted for radiotherapy and had a single dose at Addenbrooke’s in September 2019
lasting about 40 minutes. Since then, I have had annual scans where my tumour has remained stable. It is an honour and a pleasure to be a trustee and I am looking forward to helping in any way possible those who are also setting out on this journey.
MEMBER STORIES
MANDY
“I was diagnosed in 2013 and went on Watch & Wait. In 2018 I had my operation which was a complete success. AMNET made me realise I am not alone and because of the type of operation leaving a tiny piece of tumour I can share with people my positive, successful outcome with no after effects albeit one deaf ear!”
ABBIE
“Being able to contact others and have your questions answered has been priceless for us. Having Access with the Advisory Board when needed, knowing you have the latest information has been beyond words. We are so thankful to AMNET.”
ANONYMOUS MEMBER
I went from feeling isolated, like no-one truly understood to being part of something special…I've met some amazing people through AMNET, each of whom inspires me in their own way, and I will always be forever grateful to AMNET for that feeling of belonging and understanding at a time when I needed it most.