Professor Rosaline Quinlivan has dedicated her career to supporting neuromuscular patients and improving standards of care. As she enters retirement, she reflects on how medical care has transformed since she first became a neuromuscular consultant, and her own journey and achievements.
“30 years ago, we didn’t have non-invasive ventilation – now look at the standards of care for neuromuscular patients.”
Looking back, my career has come full circle. I trained at UCLH Medical School, and after many years working elsewhere, I returned to UCLH in 2010 to work at the National Hospital for Neurology and Neurosurgery, Queen Square, caring for people with neuromuscular conditions. I’m still learning, still curious and still grateful for the opportunities this field has given me.
Growing a career
Throughout my career in Neuromuscular disease, I’ve cared for people of all ages. Early on I worked with Professor Richard Edwards, an adult Neuromuscular specialist, gaining experience across the full neuromuscular spectrum – something that became crucial later on in my career as people with Duchenne muscular dystrophy and other conditions diagnosed in childhood began living longer due to improved management.
At Queen Square, I developed two major strands of work. The first was establishing a service for young adults transitioning from paediatric care with a wide range of neuromuscular conditions. The second was to establish a highly specialised service for McArdle disease and related disorders, which has become a national service for rare metabolic disorders presenting with rhabdomyolysis. Over the years our unique experience has significantly improved understanding of these conditions.
Finding my path
I trained as a paediatric neurologist and began working in muscle disease in 1990, becoming the first Muscular Dystrophy UK clinical research fellow to be appointed at Guy’s hospital. My research focused on the cardiomyopathy of Duchenne and Becker muscular dystrophy.
My first consultant role in the West Midlands was split between Robert Jones and Agnes Hunt Orthopaedic Hospital Oswestry (RJAH) and Birmingham Children’s Hospital. In 2010, I returned to work at The Centre for Neuromuscular Diseases at The National hospital, Queen Square, with part of my time also spent at The Dubowitz Neuromuscular Centre, Great Ormond Street Hospital. As more and more young adults transitioned from paediatric services, I found that I needed to increasingly focus on adult care. Since semi-retiring in 2021, my work has been entirely devoted to looking after young adults. The transition from child to adult services can be very challenging for patients and their families. I feel privileged to have been able to support them through this process.
A conversation that changed everything
People often ask what drew me to neuromuscular medicine. It wasn’t one moment but a series of chance encounters. During my first house job, I worked with Professor Richard Edwards at UCLH, he was a pioneer in muscle disease at a time when it barely existed as a specialty. Soon after he left UCLH to work at the Royal Liverpool University Hospital and RJAH in Oswestry, where he became my colleague and mentor. While training in paediatrics at Guy’s hospital, I had initially planned on pursuing a career in paediatric cardiology. But Professor Stephanie Robb, who established the paediatric muscle service there, suggested I combine my interest in the heart with muscle research. “After all,” she said, “the heart is a muscle.” It sounded like good advice, and I’ve stayed in the field ever since.
Muscular Dystrophy UK: a constant resource
Muscular Dystrophy UK has been part of my professional life from the beginning. After my first research fellowship, I continued working closely with the charity for decades – supporting their campaigning for improved neuromuscular services and helping to shape initiatives such as Bridging the Gap and the Unplanned Admissions Audits (led by my colleague Professor Hanna). Those efforts led directly to the funding of more neuromuscular care advisor posts within the NHS and coordinated regional networks including the London and South East Coast Neuromuscular Network, which I chaired for many years.
The charity has supported me with several research grants in Duchenne and Becker muscular dystrophy and McArdle disease. One of these grants led to the development of the Adult North Star Network and the first ever published standards of care for adults with DMD. We produced short videos on each of the sections of the standards of care which can be found on Muscular Dystrophy UK’s website.
I served on the charity’s Service Development and Centre of Excellence committees for a number of years, and I was honoured to receive the charity’s Clinician of the Year award in, I think, 2011. Muscular Dystrophy UK’s partnership and advocacy have been instrumental in pushing the field forward.
Achievements, challenges and progress
If I had to choose my biggest achievements, they would be establishing the highly specialised service for McArdle Disease and related disorders and the Neuromuscular Complex Care Centre (NMCCC) at Queen Square, a unique unit which coordinates all aspects of holistic care for people with complex neuromuscular conditions.
The biggest challenge has always been resources. In the NHS, there is never quite enough time, money nor staff.
“But when I consider how the neuromuscular field has evolved – from just three UK neuromuscular centres in the 1980s, to the introduction of non-invasive ventilation in the 1990s, to the use of steroids for Duchenne from 2000 and now, in 2025, disease-modifying therapies – the progress is remarkable.”
Today there are more than 25 centres, and new treatments are transforming lives in ways we once only hoped for.
Advice for the next generation
To anyone entering this field: be persistent. Papers get rejected, and grants fail. But keep going. You learn, you improve, and you eventually find your place.
I’ve had the privilege of watching neuromuscular medicine grow from a small, emerging specialty into a dynamic, collaborative international discipline. Even in retirement, I still feel there is more to do, especially on the campaigning front to improve transition arrangements and I will continue to be involved for a few years at least as Research Director for the European Neuromuscular Centre. But I also plan to cook more, travel more, and perhaps explore local politics. No matter what comes next, my heart will always remain in the muscle field.
