HEART VALVE VOICE - Key Persons
Days before being admitted to St Thomas's Hospital, London, Alison Banayoti was walking her dogs as she does everyday and thinking about her impending surgery. Fourteen years after being diagnosed with aortic and bicuspid heart valve disease, she was finally getting the treatment that she had been waiting to receive.
In 2005, at the age of 45, Alison was diagnosed with heart valve disease after she experienced what she referred to as a "funny turn." At the time she was a busy mum chasing after a toddler and was worried when she began to experience what can only be described as a rubbery weakness down one side of her body in her leg and arm. She immediately reported her experience to her GP who suspected a mini stroke and referred her to the hospital.
In hospital, Alison received a number of tests including a CT, MRI and carotid artery scans which all proved to be negative for stroke. She was then referred to the department of elderly medicine (much to her amusement, as she was still under 50), where a consultant picked up a heart murmur using a stethoscope, and told her she needed to see a cardiologist.
After receiving an echocardiogram she was eventually diagnosed with aortic and bicuspid heart valve disease. For Alison, a mum to a young child, it was a shock to discover that her health might be compromised by heart valve disease. Luckily at the time her symptoms were neither persistent nor severe, and with regular monitoring, she'd been able to raise her only child as normal - for which she is incredibly grateful.
Over the the 14 years following her diagnosis, Alison had attended special clinic once a year for an echocardiogram (ultrasound scan) and began learning more about the disease and researching treatment options. It was important that she knew as much as she could and wanted to be fully involved in all decision making. She got used to the occasional palpitations between check-ups, and was rarely put off taking her daily two-hour walk with her dogs. "My cardiologist, who is fantastic, assured me that the palpitations in themselves would not kill me, and I believed him."
Reassured, she continued to carry out routine activities until 2017, when the episodes of palpitations started to last longer, make her more tired and affect her life. She had a procedure called an ablation, to try and correct her abnormal heart rhythm and it was at this time she was was told that it was time for treatment for her heart valve disease.
Having carefully planned her treatment pathway with her cardiologist and the team of nurses and clinicians, all that remained was a final echocardiogram in October of 2018 at St Thomas's Hospital, London, where her surgery eventually took place.
As she prepared for surgery Alison, now 58, told her daughter, 15, that she intended to live to be 96 "like your great grandmother." Alison did not fear her treatment, a minimally invasive aortic valve replacement, as she had complete trust in her team of doctors, and surgeon, and had no fear of hospitals having been raised in the gatehouse of an orthopaedic unit where her father was manager and her mother a nurse. She's also the wife of a GP, and "Bring it on," was her motto throughout her experience.
Following her successful treatment, Alison was quickly on the road to recovery and feeling better within a few days of being discharged. "I'm incredibly lucky to have a doctor for a husband, who was able to take a month off work to supervise my recovery. I also have a wonderful friend who was there to help care for me in the first few weeks at home and I couldn't have been more blessed," said Alison.
Alison knows all too well that others may not be so fortunate. In the small close where she lives, two neighbours in the same household have been affected by heart valve disease. Sadly one of them passed away, while the other recovered sufficiently to travel the world, an inspiration to Alison.
"In so many cases this disease is treatable when caught early, and people like Alison can go on to lead lives as good as before, if not better," said her surgeon, Chris Young, Heart Valve Voice Chairman and Consultant Cardiothoracic Surgeon at Guy's and St Thomas' hospital. "It's so important that people know and can recognise the symptoms so they can get their hearts listened to with a stethoscope as early as possible, still the best tool to detect heart valve disease."
Now Alison has gone on to join Heart Valve Voice's patient advocate network and become one of the patients present on the trustee board. Through Heart Valve Voice, Alison has attended conferences and events with the vision of creating better awareness in the public and practitioners about the treatment pathway of heart valve disease patients. Along side her advocacy work Alison continues to live her best life til the age of 96, just like her grandmother.
Alison received a valve replacement in 2018 and is feeling better than ever. Alison brings a passion for sharing her story and raising awareness of heart valve disease to her role as trustee. Read more of her story.
Angie received her valve replacement in June of 2020. She's excited to join the Heart Valve Voice Trustee board and to share her experience of the heart valve disease pathway. Read more of her story.
Callum is our Head of Communications and since joining the team in 2019 has spearheaded our response to Covid-19, created our #JustTreatUs campaign and delivered our 100,000 Conversations pledge. He implements the strategic vision of the charity.
Chris is a Consultant Cardiothoracic Surgeon at St Thomas Hospital, London. Areas of specialist surgical expertise includes surgery of the aortic valve. He was appointed Chair of Heart Valve Voice in January 2016.
Job Titles:
- General Practitioner
- Editor in Chief of the Primary Care Cardiovascular Journal
- Trustee Board
Chris Arden is a General Practitioner with a special interest in cardiovascular disease.
Chris Arden is a GP near Winchester, Hampshire. He also works in community cardiac clinics in Southampton and Winchester as a GPSI in cardiology, assessing patients with suspected heart failure, atrial fibrillation, palpitations, hypertension and valvular heart disease.
The community cardiac service provides echocardiography, ambulatory ECG, blood pressure and event recorder monitoring; receiving consultant mentorship support from secondary care and working in partnership with specialist heart failure and cardiac rehabilitation nursing colleagues. He does a weekly stress echo clinic at Southampton General Hospital and has BSE accreditation in echocardiography.
Chris Arden is Editor in Chief of the Primary Care Cardiovascular Journal, a member of the Primary Care Cardiovascular Society, British Society of Echocardiography, British Society of Heart Failure and British Heart Valve Society. He is on the editorial board of the British Journal of Cardiology.
Rick Steeds is a Consultant Cardiologist at Birmingham University Hospital Foundation. He specialises in the diagnosis, monitoring and treatment of heart valve disease.
Job Titles:
- Dip Cardiology Cardiovascular and Diabetes Lead Nene CCG Primary Care Cardiovascular Lead
- Trustee Board
Dr Javaid qualified from Cambridge University and completed his GP VTS training in Northampton. He has an interest in cardiology and echocardiography and was a clinical lead in the Northamptonshire Community Cardiology service, which had a focus on patients with heart failure and valve disease. He was named Pulse "GP of the Year" in 2015 for his work in reducing stroke emergency admissions in the East Midlands
He was also a council member of the British Heart Valve Society, accredited member of the British Society of Echocardiography and on the editorial board for the British Journal of Cardiology.Over the past few years, he has worked with Heart Valve Voice on policy work such as the Heart Healthy Future: A Gold Standard in the Diagnosis, Treatment and Management of Heart Valve Disease in Adults report and the Primary Care Guide.
Gemma is a Structural Heart Specialist Nurse at James Cook University Hospital, Middlesbrough. She has worked in Cardiology since qualifying as a nurse in 2002. She is responsible for the care of patients undergoing TAVI and other structural procedures, in addition to coordinating the work up phase by streamlining and augmenting the patient journey ensuring timely and appropriate work up. She has extensive experience in Specialist Nursing and has helped to promote the importance of specialist nurses in the delivery of care for patients undergoing TAVI.
Job Titles:
- Member of the British Cardiac Patients Association
- Trustee Board
Keith is a member of The British Cardiac Patients Association. Keith also has a background of patients representation in a number of organisations including ambulance trusts, community health councils, patient forums and hospitals.
Kerry Pena has been the cardiac valve nurse specialist since 2014 at Leeds General Infirmary. She takes pride in managing the daily activities of the structural valve service and ensures that efficient clinical care pathways are delivered in one of the busiest and largest TAVI centres in UK. Her role is highly valued as she is the glue to every moving part of the transcatheter valve service. She believes that strong collaboration and effective communication within the multidisciplinary team is key to ensuring her patient remains the focus in the delivery of care.
Her passion at work is reflected not only within her local service unit but in the wider structural heart valve service including the referring hospitals, local general practitioners, and community cardiac teams within the Yorkshire region. She actively delivers education and training to the peripheral hospitals' cardiology teams regarding the Leeds Valve programmes which enables the service to achieve streamlined valve pathways. This commitment to providing education further extends to her colleagues and other allied health professionals both nationally and in the international community.
Kerry is a strong proponent of the single point of referral process for patients with severe aortic stenosis and she has been an instrument in implementing this. This process is aimed at ensuring that patients get the right treatment at the right time.
Kerry is a Valve for Life UK Committee member since 2021, British Heart Valve Society (BHVS)member since 2015
Livvy Gosney was treated for heart valve disease in April 2021 after being diagnosed with the condition in 2015. Since contacting Heart Valve Voice, Livvy has contributed her time and energy to raising awareness of the condition, speaking at our Patient Congress, as well as in Parliament. Livvy was also an integral part of our #JustTreatUs Campaign, going on 13 radio stations to an audience of over 10 million and speaking for Heart Valve Voice and untreated patients across the country.
Martina joins the team as our Online Community Manager. She is responsible for developing our patient community, and supports Callum to deliver online campaigns.
Job Titles:
- Partnership Manager
- Trustee Board
Phill Read is a partnership manager for a property company from a sales and marketing background and was diagnosed with mitral valve disease in October 2020.
Steve has filmed and edited many promotional videos, as well as directing music videos for a variety of artists and bands.
Steve joined Heart Valve Voice in 2014 as consultant videographer. Visit www.stevepycroft.com to see his freelance work.
Wil worked at the Big Lottery Fund for 12 years, where he spent time as an assessor, an outreach officer and policy lead for a range of investment programmes. Wil was appointed CEO of Heart Valve Voice on the 1st January 2016.
Wil has been with Heart Valve Voice for five years. He has led a number of significant events at the chairty including the development of the Gold Standard of Care, the creation of a Heart Valve Disease All PArty Political Group in Westminister, and a number of policy reports supporting patients to ensure they get improved access to treatment.