The remarkable life of

Living in the Now – My journey

Consultant neurologist Dr Agam Jung tells the story of how her vision for patient-centred care has grown from a remarkable life

I was born in India, and in India, most parents aspired for their children to be either a doctor or an engineer at that time. I grew up in an educated family in Bokaro, which was a steel township. At that time, new ‘steel cities’ were being built across the country in order to revolutionise India’s industrial capacity. My father was an engineer who had trained in the USSR in the 1950s. My childhood was spent in a city full of highly educated engineers who had been schooled abroad. It was in many ways a privileged upbringing. I attended a Jesuit school called St Xavier’s where I was taught by many different teachers, including Sister Bertha Wilcox, an English nun, and Father Macnamara, who was an Australian. My time here was to be a formative education in many ways. At school I was in the Students Council. One of the projects included being in charge of fundraising to help leper colonies. Lepers were – and still are – considered an underclass and shunned by society. We fundraised to buy them tarpaulins so that whilst homeless they would have a shelter in the monsoon rains. Having lived in a relatively privileged part of society, learning about these impoverished people was eyeopening for me. St Xavier’s was dedicated to public service as much as to the schooling of its students. Every year, in December, the classrooms would be converted into wards and whole communities from remote rural areas would travel there to have cataracts removed, allowing them to see again. My job a was looking after these patients as they recovered from surgery. I was also head of the school’s Teaching Programme where, during afterschool hours, we taught junior students from underprivileged backgrounds by providing extra classes. This was really part of the ethos of ‘service before self’ that I learned during these years before I went on to Medical School.

One of the turning points of my school education was during a lecture from a foreign doctor who had been working in remote tribal regions of the country. She talked about giving up her life to help others, and showed us how innovative she could be with very little, such as using pressure cookers to sanitise medical equipment. Her passion really made an impact on me. My Medical School MGIMS Wardha, India, set up by Dr Sushila Nayyar, Mahatma Gandhi’s personal physician, was quite different to other medical schools in India and the UK. Our studentship came with obligations to the local community. At the end of the first term, students would spend 15 days living in a village alongside very poor people, getting to know the families who lived there. We would then adopt four or five families, whose care we would be responsible for during the rest of our education. That meant that any malnourishment, disease or injury – even infant and maternal deaths in the community – you were answerable for. I know of no other education system like it. It really does underline the ethos of servitude and lets you live in other people’s shoes.

As a new medical graduate, I also spent three months at Dattapur Leprosy Colony during my internship which was life changing. Living in the colony, I learnt not just about medicine but about disparities, discrimination, courage, and compassion. Besides my education, there were other formative parts of my life that were less positive. As a teenager in 1984 I

Living in the leprosy colony I learnt not just about medicine but about disparities, discrimination, courage, and compassion.

witnessed the atrocities committed against the Sikh population in India following the assassination of Indira Gandhi by her Sikh bodyguards. It was a terrifying time as Sikhs were massacred by mobs throughout the country – I remember watching the army trucks rolling in to Bokaro and the flag march that followed in order to control the violence. Sikhs were sheltering in my school whilst the army moved in. Violence was also present in my life during the Manipur insurgency, at the India-Burma border (now Myanmar). I experienced it first-hand as a young doctor in 1984 when I was threatened by militants wielding AK47s. A friend of mine who was a police officer was killed by militants and this contributed to my decision to escape from Manipur. Witnessing the Sikh genocide and fleeing the Manipur insurgents impressed upon me a powerful concept of life and death at an early age. After completing my education in India I worked as a junior consultant in general medicine in the Sultanate of Oman for two years. I came to the UK in 2001, where I had to retrain in despite my previous experience. At this time, I wasn’t sure which direction I wanted to go in and drifted into Neurology. After my Neurology training, I completed a Research Fellowship in Neurological Infectious Diseases at Liverpool supported by The Guarantors of Brain. I soon realised that I wanted to be in a role that was more clinically oriented and hands-on in helping people. I joined the Leeds Neurology service and took on the Directorship of Motor Neurone Disease (MND) Centre at Seacroft Hospital in 2011. At the time I inherited one part-time nurse, a few therapists, and four hours a month from a consultant in Palliative Care. Fastforward to now and there are three nurses and we have just been joined by another consultant neurologist. The centre has developed phenomenally over the past 10 years. Now our team also has a dedicated psychologist, an occupational therapist, a specialist wheelchair therapist, physiotherapists, and palliative care input of four hours a week. We are regularly able to support home visits for patients who are too unwell to come to clinic.

Although we don’t have a cure for motor neurone disease yet, I am hopeful for the future. Technology has really come on, empowering patients to lead more meaningful lives and get on with the business of day-to-day living. Perceptions of motor neurone disease have changed dramatically because of people like Rob Burrow and Stephen Derby. The BBC documentary Rob Burrow: My Year with MND (2020) was viewed by around 5 million people and went a long way to raising awareness about the disease. It was an absolute delight to be part of this. The film A Theory of Everything (2014) made a huge difference in changing perceptions too.

What Rob Burrow has done in sharing his personal life and showing the effect of the disease in real time has made a phenomenal difference and really demonstrated the impact on daily life. Now people come to clinic and say ‘I have Rob Burrow’s disease.’ We are seeing earlier recognition of symptoms and our caseload has nearly doubled because of this increased awareness, early referrals and early diagnosis. When I left St Xavier’s at sixteen to go to Medical School, Sister Bertha wrote in my end of year book a quote that has stayed with me for the rest of my life. It read: “Between the relinquished past and the untrodden future lies the holy NOW, the dwelling place of God […] May you live fully in the Now of each moment as it comes to you. This is the secret of joy and peace.” Through this gift, Sister Bertha was telling me something important – that we cannot know the future, and that “now” really is all we have. This has become a personal philosophy that has guided me through my life. But what I’ve only recently realised is how I have adopted this into my professional practice as well. I made that decision to take the job in Neurology in Leeds because I wanted to be someone who helped people live meaningful lives, in spite of their afflictions. That means doing things in the now, living immersed in the now. Because no matter who we are, whether we have lived long lives or short, whether we have MND or not, none of us know when our time will come. Making the most of now is all we really have. I have seen death all my life – from the lepers we raised money for to buy them shelter, to the genocide of the Sikhs, to the Manipur militants, and I know just how unpredictable life can be. In some ways, my role as a consultant neurologist at the Leeds Motor Neurone Centre is no different to when I was fundraising at the Jesuit school in Bokaro – it’s about making life worth living.

I made that decision to take the job in Neurology in Leeds because I wanted to be someone who helped people live meaningful lives, in spite of their afflictions.