'He's everything the NHS stands for and needs' | Meet March 2025's Health Hero
Dr Stephen Jolles, Consultant Clinical Immunologist, has been crowned March’s Health Hero for his dedication and commitment to improving the lives of patients with rare conditions.
For over two decades, Dr Jolles has worked at the University Hospital of Wales, where he is a Consultant Clinical Immunologist and Honorary Professor. The Immunodeficiency Centre for Wales, provides both clinical and laboratory services for adults and children with primary and secondary immunodeficiency.
In addition to being the Clinical Lead at the Immunodeficiency Centre of Wales, he is the Co-Director of the Hub Immunology Diagnostic Laboratory of Wales and the adult lead for the SWAN (Syndrome Without a Name) Clinic, and Co-Clinical Director of Immunology, Metabolic Medicine and the Neuroendocrine Tumour Service.
Dr Jolles was nominated by Claire Akers-Dyer, whose daughter, Victoria, he diagnosed with a rare condition after they had been waiting 16 years for answers.
“Dr Jolles was my daughter’s immunologist for many years, and it’s because of Dr Jolles and his team she lives a full life,” Claire said. “He was the one that finally, after 16 years, gave her a diagnosis. The whole department gave my daughter outstanding care she needed, but never had as a child.
“He worked with her to establish the best care for her and listened to her, which is something not all health professionals do. He included us all as a family if we had things to contribute to appointments — caring for someone who’s got a genetic condition takes a team and the family are part of that team. I will forever be thankful to him for his care and compassion, he always made her feel like she could do it all even though what is written about her condition online is scary.”
Victoria added: “The award is so well deserved. Dr Jolles has been incredibly important in my life - I truly do not know where I would be now without his care."
Reflecting on their words, Dr Jolles said: “It’s so heart-warming to hear such kind words both from the patient's view and importantly the family's perspective of the impact. Victoria sounds like she's absolutely flying, which is great. I’m delighted to hear it.”
He also acknowledged the challenges of having a rare condition, saying: “It’s unfortunately all too frequently we hear of people with rare disease having a very long journey, as Victoria did, which is really hard. When you have a rare disease, you are often bouncing around the system because people may not have come across it before.
“And so, diagnosis is delayed and then the right interventions are delayed. Getting to the bottom of things and then treating optimally it is of course very much a team effort.
“We are also working hard to shorten this journey for people with antibody deficiency in Wales by screening for this within routinely performed blood tests.”
Dr Jolles highlighted the role played by the whole team, and particularly Andrew Roberts, a now-retired Molecular Immunology Clinical Scientist, in Victoria’s diagnosis.
He said: “It's never an individual effort - it's completely a team effort. I very much take this as a lovely thank you to the team rather than to an individual and in particular the laboratory, because that was how it was clinched.”
“Andrew did the sequencing of the gene and found the ‘spelling mistake’ that was probably underlying things. He was absolutely instrumental in the lab side. But nurses, doctors, laboratories - everyone will have interacted with Mum and the family and Victoria to try to make it work.”
After Victoria moved to London, Dr Jolles remained involved in her care. Claire said: “When she moved to London, he found her a team he was happy with and even to this day is happy to help her new team in London provide her the best care.”
Dr Jolles said: “One of the key things happening more and more with rare disease is that you link up outside of your centre and outside of your country. The London team are great, and it's a lovely dialogue.”
Speaking about his field, Dr Jolles said: “It is very broad, but very interesting. It’s constantly moving. You absolutely cannot stand still. But that's part of the thrill of it and the buzz - keeping up with advances.”
Claire summed up her gratitude saying: “He’s everything the NHS stands for and needs. We as a family will always be grateful.”
Health Hero is kindly sponsored by Park Plaza Cardiff and Dr Jolles will receive a Sunday Lunch for Two experience.