Meet the members of the PPIE Panel for the Hearing Health Research Theme.
Terry Emery (Member of the public)
Professional Background:
My working background is advertising and marketing, starting in ‘Madmen’ days and ending as a freelance copywriter. As I tapered my paid work, I began volunteering – Samaritans, a Talking Newspaper, Macmillan. So when deafness led to a CI, PPI was an easy add-on, about 10 years ago. It’s given me loads of fresh insights – from both clinician/researchers and other lay members. I like being able to bring ‘Patient’ experience from my deafness, alongside business and communication aspects as a ‘Public’ contributor.
Reason for joining the Panel:
PPIE is contagious, and I’ve enjoyed the range of activities available from just clarifying a Patient Information Sheet, to helping put together the Institute’s strategy and funding bid. Two favourites: a national 2-year programme to develop more/better research into under-funded hearing and tinnitus; a (nothing-to-do-with-hearing-loss) study of terminal cancer patients’ responses to trialling new drugs. On that, we developed the invitation, framed the questionnaire, reviewed the results, co-wrote the report. (And got an award for an exhibition poster on it all.)
Joyce Tucker (Member of the public)
Professional Background:
I am currently a Library Assistant in the upper school library of an independent school. Prior to this I worked in the public library sector for many years, during which I became a Certified Member of the Chartered Institute of Library and Information Professionals. At university I studied Hospitality Management, staying briefly in the sector. I currently volunteer as a school governor and previously as a community advocate for a charity.
Reason for joining the Panel:
Having been diagnosed with Otosclerosis many years ago and experience the impact hearing loss has had on myself and my family, I have been interested in research and support on this subject for some time. I finally feel comfortable and strong enough on my journey with hearing loss to put my name forward and able to be a part of something that may help others and share my experiences.
Interests:
Reading, community advocacy, education, helping others, cooking. Diversity and inclusion.
Corinne Bailey (Member of the public)
Professional Background:
I am an IT project / programme manager currently working for Nationwide, having worked as a project manager in legal, social housing and telecoms sectors. My initial career was commercially based as an IT procurement manager for BT and then into product management and continuing to project management.
As a project manager I organise and plan and the key skillset is people / team management leading people to deliver a common goal. Communication across the team and wider company is essential, using the best communication method for the group / individual. Recognising that individuals take on information in different ways and communicate in different ways. I work with culturally diverse teams and organisations with people across different continents.
Reason for joining the Panel:
I have hearing loss and have lived through difficulties with communication and getting people to understand how to communicate across perceived boundaries. This is not only for hearing loss but for cultural differences, social differences and other ways people are challenged in standard communication as both my sons are dyslexic.
Attitude towards hearing loss is beginning to change and I would like to help support education and informing people so that it becomes normal to have multiple ways of communicating with people so that they can pick the best method for them. The technology is there to do this, it just needs to be used effectively.
Interests:
I’m a trained aromatherapist and have an interest in plants and their uses. I sail and we have a small day sailing boat in the Bristol channel. Love eating out and cooking with friends and family.
Molly Berry (Patient Representative)
Professional Background:
I retired in 2022.
I was a Lipreading and Managing Hearing Loss tutor, and served on the committee of the Association of Teachers of Lipreading to Adults (Atla), 5 years as its chair during which time I was also a member of the All Party Parliamentary Group on Deafness.
I am still in regular touch with Atla.
Reason for joining the Panel:
I have always been interested in research, in particular research into hearing loss. I have taken part in several research projects into Cochlear Implants and hearing loss, mostly at UCL. I know that hearing loss is a much neglected and underfunded field, but it is incredibly important, it affects every aspect of the person's life, including the length of that life and chances of healthy ageing. There is still a stigma associated with hearing loss.
I bring not only my own experience of hearing loss, but also that of my former students.
Interests:
I read a lot, enjoy music (now I have a CI), enjoy travel and swimming (in silence), but most of my time at the moment goes on raising awareness of the climate catastrophe.
Linda Kirby (Member of the public)
Professional Background:
University library assistant (retired).
I worked in a student-facing role in a Post-1992 university in inner London.
Past member of a London Borough School Appeals panel.
Reason for joining the Panel:
My congenital hearing loss was diagnosed late in life (when I was 50). Hearing aids have transformed my life. I would like to contribute in any way I can to further research so that others can continue to benefit in the same way.
Interests:
I have a strong interest in social sciences particularly health and education (Social Science graduate 1970). In my early career I worked briefly in a social services research department and I think linking theory, research and practical application is important.
Margaret Ogden (Patient Representative)
Professional Background:
I am a PPI member who started off in health 15 years ago. Then I progressed to public health and more recently social care. My areas of interest are palliative care, equality & diversity, training, patient safety, cancer, dementia, ENT, diabetes, oral health, surgery. I hold several positions as a co-applicant. I won an award in 2019 – Putting patients and carers first. Last year I got an honorary degree from York St John.
Reason for joining the Panel:
I love PPI in ENT having got an illness called Wegener’s which affected my hearing – hyperacusis – and upper respiratory system – I have nasal problems.
Interests:
I do PPI full time and also write poems about PPI. 4 have gone in newsletters. I like theatre, cinema, art galleries, museums. Travel has been mostly to European countries.
Geoff Hewins (Patient Representative)
Professional Background:
I have been employed in radio repair for the Civil Service after leaving school. l then went to work as a Telecomms Engineer for Cable and Wireless then onto a telecomms computer maintenance company and lastly a similar company for 15 years before retiring due becoming deaf by 50 years of age.
Reason for joining the Panel:
I would like to help improve treatments for people with deafness.
I have had different hearing problems starting with otosclerosis so have a wealth of experience in the problems associated with hearing aids and cochlear implants and feel this experience may help this advisory panel.
Interests:
I am interested in current affairs, fitness, history, gardening and motoring.
Mariano Robles (Member of the Public and Patient Representative)
Professional Background:
I am an Event Producer working for MTV for over 20 years now. I am also “Selbor”, a music artist and DJ and I suffer from chronic tinnitus possibly due to all the loud music exposure at events. I am a supporter of Tinnitus UK and join the monthly of the Musicians Tinnitus Group regularly.
Reason for joining the Panel:
I am interested in research and have participated in clinical trials in the past. The challenges of people living with tinnitus and hearing loss are worth my time to help find tools (and hopefully a cure one day).
Interests:
I’m interested in meditation, music, cinema, art and cooking. I love traveling too usually with a purpose like volunteering.
Ozzy David-Uwangue (Member of the public)
Professional Background:
A HR professional and writer, with a niche in Employability and Placements. Currently an Equity Champion at the St George’s University of London, and previously the Athena Swan - EDI Professional Services Representative at the Medway School of Pharmacy (2020-2024), with over 20 years industry experience. Participated in research for Neurodiversity at the St George’s University of London, and contributed to the development of a library accessibility document. I collaborated with staff, external and internal stakeholders (students, pharmacist within the community and NHS hospitals), to host successful Careers Fairs at the University of Kent and Medway School of Pharmacy.
Reason for joining the Panel:
I would like to be involved in research that can lead to early detection and intervention, such as risk factors to hearing loss, signs/symptoms and possible genetic dispositions.
I am interested in supporting research and policy making and to effect positive change in how some patient services are delivered. For example, testing advanced technology for UCLH hearing health and reporting or presenting outcomes to patients.
I strongly support research because it would help me understand the pathophysiology of hearing loss (noise or age-related and/or due to a genetic disposition).
Research can help in making improved or early diagnosis and offering various treatment options to patients.
Interests:
I am interested in creative activities, writing, home décor, sports, intellectual pursuits, discussion/journal groups, reading, research, volunteering and travelling.
I volunteered as a Responder for the National Volunteer Service during the pandemic, ran a half-marathon for Cancer Research UK in 2014 and organised fundraising activities for UNICEF.
John Stanley (Member of the Public and Patient Representative)
Professional Background:
I am a pharmacist (retired) from a wonderful career, including patient facing, group management, Charity Management, University staff and finally working together with both NHS Formulary Management & Pharma.
A common theme of my work has been to represent individuals and groups, ensuring their voice is heard amongst all the “noise” that accompanies rapid change and development.
Reason for joining the Panel:
My hearing problems have challenged me to adapt and to learn about devices and to develop new communication skills. Besides my Pharmacy network I enjoy contributing such that I can across other medically orientated groups, including Moorfields and Anglia Ruskin University Medical School, and now with UCL PPI.
Interests:
I enjoy meeting people, reading books, curating my vast music collection, travel and sampling good wine and food, with family and friends.
Carl Rees (Patient Representative)
Professional Background:
I’m a UK healthcare communications and stakeholder engagement specialist with over 30 years’ experience covering all elements of communications strategy development, hands-on implementation and operational management. Much of my career has been spent in communications roles within and around the NHS and associated healthcare and government bodies. I have significant experience of working in very high-profile national organisations involved in the delivery of urgent and emergency patient care, including all UK ambulance services, a number of other NHS trusts and a range of organisations working towards improved healthcare resilience nationwide.
Reason for joining the Panel:
I hope to be able to bring something useful to the table in terms of my lived experience as someone who lost hearing in one ear due to Sudden Sensorineural Hearing Loss aged 48, and then the other ear the same, aged 52. The sudden overnight experience of becoming deaf – with all of the difficulties and challenges that brings – is something that cannot be underestimated and I think it will help your researchers to get a better insight into deafness to help with their programmes. Also, I feel a strong desire to help others who are going through what I have had to endure, as well as others in the future.
Interests:
I enjoy reading (especially autobiographies or biographies), history, politics, cooking, the sunshine, my children, football and almost all forms of sport. I am also very interested in all things digital and political!
Lipi Begum (Member of the Public and Patient Representative)
Professional Background:
I am an NHS Health Inequalities Improvement Manager and previously an Evaluation Manager at a Health Innovation Network. I hold an academic background (PhD) in social research and supervise postgraduate research in health and business. I am passionate about health equity and serve as an ED&I Trustee for a young people’s mental health charity in Camden. I have experience working with secondary care, schools, charities and voluntary community sector organisations, as well as with underserved and South Asian communities.
Interests and reason for joining the Panel:
I’m interested in projects which tackle health inequalities and improve access to ENT services and research for underserved patients, the workforce and community groups. I’m also interested in collaborative work with patients, the community and commercial partners. I am also fascinated by hearing health and its connections to genetics, the brain, gut health and mental health, as well as innovative hearing technologies.
