The BANA team comprises employees at our head office in Chesterfield, our Board of Trustees, plus a host of volunteers from around the country who act as area support group leaders and in editorial and area group administration roles.
Jamie was diagnosed with an Acoustic Neuroma in 2016. He had surgery on 1st July 2019; an easy date for him to remember being BANA Awareness Day and his wedding anniversary.
Jamie is semi-retired. He works part-time as a Project Director for a National charity, OnSide Youth Zones. He works with local authorities and supporters to bring forward new state-of-the-art, multi-million-pound Youth Zones. He is also a trustee at Blackburn Youth Zone.
Before this, Jamie worked in local government for 30 years. He started as a trainee lifeguard and progressed to Deputy Chief Executive. Throughout this time, Jamie has worked closely with Third Sector organisations, including partnership initiatives, as a commissioner and provided advice and support on strategy, fundraising and governance.
Craig is a medical writer and patient advocate who has worked in medical communications for over 20 years. He is passionate about helping people understand complex medical concepts and language. The work he does involves translating information into easily accessible segments so that people aren’t overwhelmed by the complexity and amount of information they receive. Craig also has an interest in health psychology.
Craig is delighted to join BANA as a trustee.
After starting out in sunny South Africa, he moved to France where he lived for 20+ years before settling in Oxford around 6 years ago. He enjoys travel and photography, as well as learning new languages.
My name is Andrew Shipsey and I am honoured to have joined the BANA Board as Treasurer. I currently work in the finance department at University Hospitals Plymouth NHS Trust as Head of Financial Support.
I joined the NHS as a finance graduate trainee back in 2005. In the first few years of my career I was asked to cost an acoustic neuroma procedure (I didn’t know what that was at the time), and was involved in a business case to replace linear accelerators, one of which was to have the ability to do stereotactic-radiotherapy and radiosurgery, met the Medical Director, who was to become my surgeon, about potential investments in cyberknife and gamma knife and worked with budget holders about gaining funding to support patients with neurofibromatosis II.
It was therefore almost fate that I was diagnosed with an acoustic neuroma in 2014. I was starting to have problems with my balance, I was never great at football but I was even worse with little to no balance, hearing – I was struggling to hear music on my headphones, I thought the headphones were broken but in hindsight it was my hearing that was not working and had gaze-evoked tinnitus. I was referred to the hospital for an MRI scan after initially being told I had water behind my eardrum.
I received a phone call the day after my scan asking me to come in. I wasn’t expecting to be called back so soon to get given good news. Indeed, by this time, with the symptoms I had, I had identified an acoustic neuroma as the likely culprit. However, I was not expecting to be told I had a 4cm tumour that was pressing against my brain stem that needed fairly urgent treatment.
A few weeks later I was having my first operation. I was advised by the consultant that it would feel like I had been ‘knocked for six’, and he wasn’t wrong. It was exhausting trying to get on my feet again but slowly it felt like I was getting better, with a huge amount of patience and support from my family. I went to see the consultant in clinic and was told that about half of the tumour was removed in the first operation, and I would need another. I had my second operation the following year. Whilst still a big operation, the recovery felt smoother second time around. In the second operation my facial nerve was bruised and I was unable to blink for a few weeks. With some rehab and massaging, the nerve regained some strength. I can just about blink now, but still have some weakness on that side – I notice a lopsided look in photos but I think we notice things like that more than others!
Due to the location of the tumour near the brainstem and facial nerve, some tumour remained after the second operation. I was listed for stereotactic radiosurgery the following year, with the aim of stopping the tumour from growing any more. It therefore came as a shock that after the SRS the tumour grew in size. I understand that this can happen with SRS, but was unnerved to know that if it did continue to grow a third operation may be needed.
In the last few years, the tumour does appear to have remained the same size. It is larger than I would like, but whilst I am still able to work and drive and largely live the life I had pre-diagnosis, no further treatment is planned. I am having annual surveillance scans to keep an eye on it.
I am immensely grateful to the NHS for saving my life and the support offered by BANA to myself and my family at a difficult time. Interacting with others on the BANA Facebook group, hearing the stories of other patients in the newsletter and picking up hints and tips have been a huge source of support.
I am looking forward to bringing my professional skills, and determination to help those on their AN journey to the BANA Board.
Simon Lloyd is a Consultant Skull Base Surgeon at Salford Royal Hospital and an Auditory Implant Surgeon at the Manchester Royal Infirmary. He is also an Honorary Senior Lecturer at the University of Manchester. As part of the Manchester Skull Base Unit. He strives to offer a balanced, multidisciplinary approach to the management of patients with vestibular schwannomas.
He is also committed to improving outcomes for patients with Neurofibromatosis Type 2. Professor Lloyd’s current research interests include transtympanic drug therapy and novel methods of predicating vestibular schwannoma growth. He is widely published in the field of skull base surgery and has written six book chapters and a book as well as guidelines on the management of vestibular schwannomas in NF2 for the European Academy of Otology and Neurotology. He is also committed to training the next generation of skull base surgeons, running one of the leading international fellowships in skull base surgery. Professor Lloyd has been involved with BANA since 2007 when they provided a grant to support research into outcomes in patients undergoing conservative management of vestibular schwannomas.
Andrea started out as a Staff Nurse (RGN) in 2001 with a period in Orthopaedics, Trauma and then community nursing before settling into Neurosurgery and Skull Base in 2006. After a period as ward sister, she commenced the role of Skull Base Specialist Nurse in 2009; the service being built from scratch to develop this new role within the trust.
Over the years she has developed the service to encompass the needs of patients with skull base pathology including Acoustic Neuroma. The service at Salford now has around 150 new referrals per year for Acoustic Neuroma and Andrea has set up nurse led clinics to follow patients after surgery and SRS along with telephone clinics and rapid access clinics to identify and treat symptoms. She has been able to develop comprehensive patient information documents, local policies on the management of skull base patients and has recently been appointed onto the council of the British Skull Base Society. Andrea participates in the Manchester AN support group and is delighted to take on the role of BANA Trustee.
Andrew was diagnosed with an Acoustic Neuroma in 2017. Then went on to have translab surgery on the 22nd of May 2017; that date will never be forgotten as it was the Manchester Arena bombing that evening; he also turned 40 in March.
In January 2017, Andrew joined a local running club; over the years, this has proved to be an incredible part of his positive recovery, from the people he has met to the confidence he has gained from fellow runners. He is now a member of the club’s committee.
Andrew took on a crazy running challenge in 2012 called 12IN12, 12 marathons in 12 months. All this to raise awareness & funds for the three incredible charities that have been there for him over the years, in his words, “ to give a little back”.
For the last few years, Andrew has volunteered for BANA on zoom chat meetings, under 35s & other meetings when needed. His positivity and outlook on life & and the will to never give up is an inspiration for other AN patients.
Juliette has worked as a nurse practitioner for the NF2 and skull base (ENT) service at the Cambridge Skull Base Unit since 2010. She is co-lead for the NF2 service for the East of England/Midland region. She is the team’s lead for user and carer issues and patient experience. She has previously sat on the British Skull Base Society Council and advises various relevant charities and support groups.
Juliette runs nurse-led clinics for patients diagnosed with a vestibular schwannoma post-surgery or on surveillance and is a direct point of access for patients experiencing issues with symptoms related to their tumour or treatment. She attends regular skull base MDT meetings and consultant-led clinics to provide patient advocacy and support. Recent research projects have focused on the probability of growth in vestibular schwannoma and when surveillance imaging should cease. Her Master’s dissertation focussed on the effect of vestibular schwannoma on quality of life and argued for improved emotional support for patients with vestibular schwannoma, focusing on helpful coping interventions and virtual follow-up.
Hi all. I am pleased to be part of the team at BANA and support the cause as a Community Support Administrator. I have previous experience working as a youth support worker in local communities and working for Mencap, supporting people with learning disabilities and difficulties, helping them to have a voice and up-skill to achieve their goals.
Other work history includes working as cabin crew in Dubai for four years. I loved this fast-paced opportunity to travel, experience different cultures and make new friends worldwide! However, after my travels, I was pleased to return home to be closer to my family. I live with my husband and our two children. I enjoy spending time with my family, visiting new places, and exploring. I also enjoy running and regularly enter charitable races. I am a trained Reflexologist, and I’m a trainee Counsellor. I enjoy working for BANA and being as helpful and supportive as possible to people with an Acoustic Neuroma. I hope to raise awareness throughout my journey with them to develop a better understanding of the condition.
Brian Moore is Emeritus Professor of Auditory Perception at the University of Cambridge. His research interests are: the perception of sound; mechanisms of normal hearing and hearing impairments; the relationship of auditory abilities to speech perception; design of signal processing hearing aids for sensorineural hearing loss; methods for fitting hearing aids to the individual; design and specification of high-fidelity sound-reproducing equipment; perception of music and of musical instruments.
He is a Fellow of the Royal Society of London, a Fellow of the Academy of Medical Sciences, a Fellow of the Acoustical Society of America, a Fellow of the Association for Psychological Science, and an Honorary Fellow of the Belgian Society of Audiology and the British Society of Hearing Aid Audiologists. He is a member of the Experimental Psychology Society (U.K.), the British Society of Audiology, The American Auditory Society, the Audio Engineering Society, and the Association for Research in Otolaryngology. He is President of the Association of Independent Hearing Healthcare Professionals (UK). He has written or edited 19 books and over 600 scientific papers and book chapters. He is an associate editor of the journal Hearing Research. He has been awarded the Littler Prize and the Littler Lecture of the British Society of Audiology, the Silver and Gold medals of the Acoustical Society of America, the first International Award in Hearing from the American Academy of Audiology, the Award of Merit from the Association for Research in Otolaryngology, and the Hugh Knowles Prize for Distinguished Achievement from Northwestern University. He is wine steward of Wolfson College, Cambridge.
Thank you to Sara for continuing to play a significant part in the BANA team. As Ambassador for our charity looking at opportunities to raise the profile of BANA and raise awareness of Acoustic Neuromas. You are a breath of fresh air, a burst of energy and a pleasure to speak to. We are honoured to call you our Ambassador!
In 2022 Sara will be running from Lands End to John O’Groats. A massive challenge in 2022, and she needs our support! If you would like to support Sara you can do so by clicking here – Sara’s LEJOG challenge 2022.
“As some of you may be aware, in September 2022, I will be embarking on my biggest challenge yet. I will be running the length of the UK, from Land’s End to John O’Groats.” Sara Crosland – BANA Ambassador
In July 2015, I had surgery to remove an Acoustic Neuroma. Following the surgery, I was left completely deaf in my left ear and needed to rebuild my balance and redevelop the ability to walk unaided. After spending two days unconscious and a week in the hospital, I returned home to continue my recovery. During diagnosis, surgery and recovery, I was a Professional Footballer for Liverpool FC, and almost three months to the day after surgery made my debut in the Champions League. Now, I am continuously trying to share my story to help inspire people facing their life struggles.
I’m determined to raise awareness of brain tumours and vital funds for this incredible charity. I feel fortunate to share my journey and experiences with others affected by ANs and regularly chat with people to educate them and provide support. Had I been given a choice to have the brain tumour or not, I would choose to go through the same journey again. As difficult as it’s been at times, it’s allowed me to meet some inspirational people, share my journey to help others, and give me an inner strength that I didn’t realise I had.