The Art of Being Present

Did you always dream of being a clinician?

I wanted to go to art school, but my parents wouldn’t entertain that thought. When I was nine, I saw a campaign against river blindness on a TV program, Blue Peter, and it struck me how a simple medication could prevent the disease spread, and prevent children from going blind. As my parents are from Tanzania, whenever I went there to visit family, I would see extreme cases, which made me consider becoming a doctor as an avenue I wanted to pursue.

Interestingly, during a career advice meeting at school, I was told that I should become a nurse, on account of me being female, and because I wanted to help people. I knew this wasn’t the right route for me – I was academically-minded, so I decided to go to medical school.

How difficult was it to choose your specialty?

From quite early on, I was interested in specialties focused on the areas above the shoulders! I really enjoyed neurosurgery, ophthalmology, psychiatry, and maxillofacial surgery. The latter was probably because of a particular maxillofacial consultant who used to paint his patients. I’m an art lover who used to paint a lot, so this idea of combining my passions really appealed to me. I was put off neurosurgery by a sexist consultant who told me that the reason why there so few senior women in that specialty was hormones kicking in, and women leaving to have children.
After finishing medical school, I worked in A&E at University College London Hospital, and it was a difficult time, as we had very strict targets for patient waiting times, and it felt like managers were constantly monitoring us and the patient journey, making us work faster and faster. The year was 2005, and in July, the 7/7 bombings happened. The whole of London was silent and still, the roads were empty. And yet, patients still came to A&E complaining of common colds and ingrown toenails. When I asked them why they came in on the evening of the bombings, they responded that it was still quicker than waiting to see their general practitioners. It was a turning point for me – I knew that I needed a change or a break. That was when I considered a PhD in ophthalmology. I was offered a funded program in ophthalmic genetics at Imperial College London, and in this way, I committed to ophthalmology.

Being an ophthalmologist has certainly lived up to my expectations. During my training, there were difficult times, especially when I had to combine being a trainee and a young mother. Sometimes I’d leave the house at 6 am to make it to clinic or theater, and come home at 11 pm after an eye casualty shift, and, for days at a time, only see my children asleep in bed. But now, as a consultant and a professor at UCL, I could not be happier. Ophthalmology is such a cutting-edge, innovative field! I love the fact that I can divide my time between research and clinical work, and I feel very supported.

Who inspires you?

Sir Peng Khaw has always inspired me with poise, command, and graciousness. Andrew Webster – with his integrity and intelligence. But these days, it’s the successful, powerful women who blow me away, and there are so many of them! Christiana Ruhrberg, Professor of Neuronal and Vascular Development at UCL Institute of Ophthalmology, Honorary UCL Professor of Genetics Veronica van Heyningen, Professor Jugnoo Rahi – Professor of Ophthalmic Epidemiology at UCL Institute of Child Health, and Dame Carrie MacEwen Chair of the Academy of Medical Royal Colleges and the former President of the Royal College of Ophthalmologists in the UK – they all have so much focus, energy, and brilliance.

Outside of ophthalmology, I’m inspired by people who have made great discoveries, like Jennifer Doudna, or achieved great things based on their beliefs, like Malala Yousafzai. We should all strive to improve the future of many, even if it means putting ourselves at risk.
I get constant inspiration from my family, who always give me the best advice and make me feel better, especially when things are tough. I have great admiration for everyday people with a strong work ethic and good intentions, who work hard and always try to think of others.

Is there anything that weighs on you?

Despite the great advances in gene therapy, and the fact that there is now a treatment for patients with mutations in the RPE65 gene, this can only help a small number of individuals in the UK. I spend a great deal of time thinking about all the other families whose children suffer from vision-threatening inherited genetic disorders, but there is no available treatment for them. I would love to give people more therapeutic options in the future, and it means that I take this responsibility very seriously. I try to remind myself that I can only do what I can, and that these treatments need time, hard work of many people, and huge financial investments. I keep a positive view that in the future these new therapies will be available to many more patients.

I always wonder if I’m doing the best for my children. Am I there enough for them? Do I not waste precious time by responding to work emails when I’m with them? I aim to be more present, but balancing the time I’m spending with my own children, with working on treatments for other people’s precious children, is not easy.

In practical terms, I loathe administrative obstructions, and the time I waste having to check and chase others. I would love to see processes become more streamlined and transparent, so that we can make positive change happen more easily– in a safe and regulated manner, of course.

Tell me about your Women in Vision UK presidency…

Women in Vision UK was founded by Maryse Bailly, Julie Daniels, and myself because we felt there wasn’t enough female representation at meetings, grant panels and conferences, and we initially aimed to create a speaker list for event organizers. However, we didn’t feel that was enough, so we are now aiming to raise awareness of gender inequality in our field more broadly. I would love to be able to say that one day we won’t need to exist, but for now, we have over 350 members across all fields of ophthalmology and vision research: we have optometrists, orthoptists, opticians, those in industry, statisticians, publishers, scientists, and of course ophthalmologists, all working together. As one of the founding members, it was a natural step for me to become president of Women in Vision UK. Recently, I’ve been spending a lot of time restructuring the organization to create a new framework for mentorship, training, and career support at all stages. We have welcomed diversity, education, leadership, and research leads who are brilliant beacons coming from various sub-specialties. We have been organizing activities for our members, to make sure we all have opportunities to develop ourselves to be the best we can in our field.

Why did you decide to join the Francis Crick Institute?

When I did my PhD at Imperial College London, I was studying eye development and ocular malformations at the Department of Molecular Medicine, arm in arm with scientists working on infectious diseases, cancer, developmental limb defects, and I felt that all the extra knowledge and cross-disciplinary collaboration gave me a much wider scientific perspective. By joining the Francis Crick Institute, I have essentially returned to this multidisciplinary environment, outside of purely vision-related research.

The Institute is the biggest biomedical research facility under one roof, with so many Nobel Prize winners working there! Its mission is discovery without boundaries. Francis Crick scientists are constantly making world-class discoveries to understand life and benefit human health. I really feel that working here will help me adopt a new research culture that I can bring back to UCL, especially now that we are moving towards a much more integrated center, through Project Oriel. I value the opportunity to rub shoulders with great scientists enormously, and it gives me an opportunity to undertake my research with access to state-of-the-art resources. It has been fantastic, although COVID-19 has hit us quite hard with social distancing restrictions and reduced in-person events. I haven’t had as many networking opportunities as I would under normal circumstances, but I’m hoping that over the next few months and years these opportunities will open up again.

What has the pandemic been like for you?

Before the pandemic, I had done a lot of work on a quality-improvement project, canvassing patients’ opinions on the implementation of tele genetics. It was my hope that we would move to virtual consultations for patients, improving their experience, access to care and reducing unwanted travel into London. Then, COVID-19 hit and accelerated this process. Unlike many clinicians, I didn’t have to pause my work, and as soon as the lockdown was announced, I converted my patient appointments to teleconsultations, seeing all my genetic patients virtually throughout that period. I found it very important, as pandemic-related delays in care caused many families and individuals to experience heightened anxiety and stress, and they needed to stay in touch with their healthcare providers. Since in many parts of the country these consultations were deemed non urgent, with appointments cancelled, I undertook weekly voluntary “Ask the expert” sessions for three UK sight loss charities, which provided access to patients from across the country. What those sessions highlighted was that families were very worried whether they were doing the best for their children, and this led to many referrals to my clinic, where patients could access genetic testing, which hadn’t been offered to them before.

I was also contacted by many patients with Charles Bonnet Syndrome as a complication of their inherited eye disease, who were suffering from significant flare ups during the lockdown. One patient was having suicidal thoughts because of the increased frequency and disturbing nature of his hallucinations. I was able to tell those patients where to seek help, and it led to further research studies by my group that showed that social isolation, loneliness, and exposure to chronic bad news were precipitating factors for the condition. This has resulted in a lot of publicity and raised awareness of the syndrome.

My basic science lab-based research suffered the most in the pandemic. Many experiments had to stop, and we had to terminate long-term induced pluripotent stem cell cultures and retinal organoids that have a culture period of 40 weeks, similar to a normal pregnancy! We lost a lot of time and resources. It has been particularly difficult for my PhD students whose work relies on sending tissue for RNA sequencing, for example, in a specific time framework, but they have shown amazing levels of resilience.

Do you have time for any hobbies – do you still paint?

I have very little spare time, but I hope I can get back to oil painting when my children are older. At the moment, I try to spend my spare time with them crafting. Art is my passion, and whenever I have the time to visit an exhibition, I feel hugely inspired, and I get a burning desire to get back to doing it myself. I’m lucky to live in the countryside, and I enjoy nature and appreciate the changing seasons. I have pygmy goats and chickens, which are great pets!

What are your hopes for the future?

I would like to see genomic ophthalmology as an established subspecialty, with more trained specialists. I’d like to see patients with all forms of inherited eye disease get early access to genomic testing to avoid diagnostic delays, so that they can benefit from approved genetic treatments as soon as possible. I think we are on the brink of huge integration between genomic data and personal clinical information that will create a field of personalized, preventative medicine that every clinician will practice in some way. I hope we can efficiently monitor our patients from home or with shared local care, phenotyping them based on their daily behavior, and providing a holistic overview of the patient, focusing not only on their sight, but looking at overall development, mental health, and the effect of vision on systemic comorbidities. Eventually, I can see babies – instead of getting a heel-prick test – getting their full genomic sequencing done, and receiving a genomic passport to guide future treatments or interventions. I have begun to build the research framework for some of those advances, and I think the longer-term future looks really promising!