Obituary - Professor Anne O'Hare, leading paediatric neurologist
Written by Sinéad Rhodes and Paul Vallely
Professor Anne O’Hare was a pioneer and visionary in the field of the assessment and diagnosis of childhood learning difficulties and neurodevelopmental conditions, especially Autism Spectrum Disorder. She has been described as
the champion of many children.
A leader in her field, Professor O’Hare was a paediatric neurologist and developmental paediatrician with extensive clinical experience in neuro-disability, neuroscience and child protection. Her research interests at Edinburgh University and the city’s Royal Hospital for Children and Young People, encompassed the development of speech, language, communication, motor skills, vision and learning.
She broke new ground in the early identification and support of children and young people with developmental disabilities, helping reduce waiting times for the assessment and diagnosis of autistic people. And she did this with a fierce passion for social justice – and an ironic sense of mischievous fun.
Anne O’Hare was at the forefront of the development of effective assessment, diagnosis and interventions for children and young people – publishing Scotland’s guidelines on the topic several years before NICE did the same for England and Wales. Consulted nationally and internationally by colleagues who saw her as
a fountain of knowledge on many areas of childhood development and disability, she helped Scotland lead the way internationally on developments in community understanding, clinical practice and inter-agency working for the benefit of autistic children, young people and adults.
At the memorial celebration of her life, Professor Siddharthan Chandran, Dean of Clinical Medicine at the University of Edinburgh said:
Anne was absolutely a visionary. She was way ahead of the curve in recognising that if you really want to do something impactful and sustainable, you really have to start by working with people living with neurodevelopmental challenges – and listen to them and their families.
That might now sound a common-sense orthodoxy, but Anne O’Hare had pioneered the approach from early in her career at a time where research was most often conducted ‘to’, rather than ‘with’, people. He added:
At the root of future success, is working with people living with these conditions, so that research is shaped and influenced by them… Anne was way, way ahead in doing that.
As founding Director of the SMRC Research Centre for Learning Difficulties at the University of Edinburgh, Anne brought to bear her extensive clinical expertise, academic knowledge, and a deep empathic understanding, to elevate patients’ and families’ perspectives so that they became central to all aspects of the research process. Early on she declared:
It is vital that people with learning difficulties are given a voice and are involved in research design from the outset. She declared that in her experience
parents were always more accurate in the early years of picking up autism traits than clinicians.
What made Anne O’Hare special was that she worked tirelessly as both a doctor and as an academic – and excelled at both disciplines. What made her distinct was that her clinical and research work were inextricably linked. Excelling in both, she firmly believed that research work should closely inform and support clinical practice. Her research was a practical way of improving care for children with neurodevelopmental problems.
As a clinically active paediatrician she brought other clinicians with her by seeking input from them on research questions.
The research had to make sense to clinicians so that it would be valued by them and would become clinical practice, said Dr Ereni Skouta, consultant in child and adolescent psychiatry at SLAM NHS who formerly worked with Anne in NHS Lothian.
Anne was both a brave clinician and a thoughtful researcher and both were equally valued.
And while, as an academic scientist she described a coherent pathway for the assessment and diagnosis of Autism Spectrum Disorder which allows children and young people referred into the service to be seen in a timely way, as a doctor she happily fulfilled all aspects of her role in Community Paediatrics –
and did so with the same thoroughness and care and attention to detail, said consultant paediatrician Sarah Clegg who worked in the Community Child Health team with Anne in Edinburgh.
What was evident from her research, said her collaborator on an SMRC project, Katherine Cowan, was
that her motivation wasn't her own research interests, but rather her innate sense of fairness and genuine belief that research should focus on the things that matter to people on the ground.
Anne took an evidence-based scientific approach but a compassionate one in equal measure.
She brought her intellect and wisdom to ensuring we really listened to families and children and young people and responded to the concerns arising for them. As different issues arose, like the MMR [controversy], Anne would listen and have supportive conversations with families around their decisions and always be able to share and distil the evidence available. She often said autism diagnosis is an art, not a science, and she was a master artist. Watching her assess and share clinical outcomes with families and having her mentorship was a huge privilege.
From the point of view of her patients, testimony of Anne’s singular blend of skills was given at Anne’s memorial service by Susan Hardman Moore, the mother of an autistic child, who said:
Anne made a difference to so many young lives. For us, she stepped in at the moment we started on a roller-coaster journey to support our two-year-old son. Her common sense and wisdom, over the years, were a life-changer for him and for us. He wouldn’t be the adult he is today without the down-to-earth insights and compassionate care that Anne brought. We always left meetings with her reassured and encouraged. We count ourselves fortunate to have been one of a whole generation of families that she looked after in Edinburgh.
Her autistic son, Rannoch, then stood up before the hundreds of people gathered at Anne’s memorial and spoke with huge self-assurance to say:
Hello. I’m Rannoch.
I thought Anne was very smiley, warm-hearted, kind, and helpful – and was such an important person in my life. I’ve met her and got to know her since I was two.
She helped me all the time I was growing up. I need help with listening, communication, and my anxiety.
I told Anne about my favourite things like wind farms and unicycling, et cetera. And I’m still into those things.
Anne helped me stay calm and be confident. What a tragedy Anne isn’t with us anymore.
I want you all to understand how much she helped me. Thank you.
Rannoch summed up the untimely nature of Anne’s death, at the age of just 67, better than anyone else.
And Anne went beyond working with patients in a clinical setting. She created a strong local ethos of advice and support, through the time she gave to parent networks such as AFASIC and the Lothian Autistic Society.
Anne’s distinctive blend of empathy and compassion is well-illustrated from an anecdote from her private life. Mike Owen, one of Anne’s neighbours, remembered how they had builders in their home and were living in chaos when Anne made a surprise visit. He recalled:
Perceiving the devastation and its direct effects on us, Anne rang our doorbell and said: “We’re off on holiday. Could you possibly move in and house sit while we’re away? Perhaps it might help for you to stay at least until your essential services are restored.” Can you imagine what that life-saving gesture meant to us? And yet Anne had cultivated a self-effacing knack of presenting such events as low-key, no big deals!
Summing all this up at the celebration of Anne’s life, the faculty Dean, Professor Chandran, spoke of Anne’s
imagination, ingenuity and curiosity. This, when allied to a very sharp intellect, albeit gently carried, and her immense generosity, kindness and humanity, makes for a very very powerful combination. He went on:
It was that cocktail that underpinned her ability to build enduring, strong, meaningful partnerships that cut across borders, boundaries and disciplines. This is all very fashionable now, but Anne was doing this when nobody else had really thought about that. Her legacy, in terms of driving and shaping the research agenda, will endure in many ways and grow.
Professor Anne O’Hare’s long and productive clinical and academic career began when she completed her undergraduate medical degree in 1978 at the University of Newcastle. She proceeded to specialise in Paediatrics and was awarded a Doctorate of Medicine in 1987 with a thesis focused on neurological problems in childhood leukaemia. Her work on the impact cancer had on the developing brain was the start of a life-long interest in childhood neuro-disability.
It was characteristic of Anne to choose to continue broadening her experience by taking an elective in France in 1987. The easier route would have been to take an elective in North America where the approach has much more in common with the British school of Neurology. Typically Anne chose a more challenging option in order to work at the Necker Hopital des Enfants Malades with Dr Jean Aicardi – at that time one of the most respected paediatric neurologists in the world with a huge reputation as a clinician and researcher. Her choice also exposed her to a different tradition – and in a different language. Dr John Livingston, now Professor of Paediatric Neurology at the University of Leeds and Consultant Paediatric Neurologist but then a junior Edinburgh colleague, a year later followed her to France. He recalls:
It was unusual for British trainees to go to work in Europe at that time, especially in France where it was essential to speak French and the local doctors were quite unwilling to make any effort to speak English. So, one of the challenges (and benefits) of our time there was to learn French.
Anne’s decision to learn to speak French to the level of competence required for clinical practice – having previously only studied it at O'level – showed her dedication and fearless commitment to excellence. Anne’s own experience as a learner informed her understanding of the challenges faced by children with language impairments. Professor Livingston continued:
The Necker was a referral centre for the whole of France, and also received many patients from post-colonial France as well as other parts of Europe. We saw many clinical problems that we had never seen before and also had the great privilege of working with Jean Aicardi. He was an outstanding clinician, thinker, teacher and a charming person.
Anne’s experience working with Aicardi informed her approach to listening and meticulous preparation and observation and nurtured her capacity to look at things from an outsider’s perspective. It led to Anne’s career-long commitment to teaching and mentoring with the British Paediatric Neurology Association and ultimately to Anne becoming an editor of the 4th edition of Aicardi’s internationally renowned textbook Diseases of the Nervous System in Childhood. Right up until her retirement Anne would refer to instances where she had diagnosed a rare condition that she had seen in her work with Jean Aicardi.
Throughout her career and despite her busy schedules, she always seemed to relish taking on new tasks. Ann le Couteur, Emerita Professor of Child and Adolescent Psychiatry at Newcastle, recalls how, early on, she worked with Anne to develop the first clinical skills training course in the use of the Autism Diagnostic Observation Schedule (ADOS):
This was held in Edinburgh. It was organised and led by Anne ... However, at the same time Anne was also wanting to be a participant training on the course ... I said she was completely mad trying to juggle all these different tasks ... Of course, Anne took no notice of my advice. The course was a success and Anne was absolutely central to securing funds and enthusiasm for much of this work.
Anne worked tirelessly on many projects with the aim of improving childrens' outcomes in innovative and resource-effective ways. One involved facilitating the identification and support of children and young people with developmental disabilities by validating a screening tool in paediatric services (CAIDS-Q). Another to develop a programme to meet the mental health needs of children with neurological impairments, Psychology Adding Value Epilepsy Screening (PAVES), has made a difference to hundreds of children with epilepsy. Anne’s role in its development, and in securing extensive funding for the project, has been described as
crucial and seminal.
Anne was an active member of both the British Academy of Childhood Disability (BACD) and the European Academy of Childhood Disability (EACD). Her EACD colleagues describe Anne as having
very much inspired us in ways we look at children, at disability, place knowledge in perspective, and strive to work ethically.
Dorothy Bishop, Professor of Psychology at Oxford, said of her first encounter with Anne:
I was delighted to find a paediatrician who had not only extensive clinical experience of language disorders and autism, but also had read widely and had in-depth knowledge of language development. Anne became “a key person” in Professor Bishop’s CATALISE Consortium, a multidisciplinary group of experts assembled to build a nationwide consensus about the diagnosis of children’s language disorders. With an academic expertise which she could relate to everyday clinical contexts,
Anne … made an immense contribution to children’s lives, as well as to research progress in this field.
Towards the end of her career Anne O’Hare took on a new challenge as founding Director of the Salvesen Mindroom Research Centre for Learning Difficulties at Edinburgh University.
Our research programme is ambitious and far-reaching, she said at the start of the centre’s work to highlight the top ten priorities for children and young people living with a learning disability. Again, she was emphasising:
It is vital that people with learning difficulties are given a voice and are involved in research design from the outset. The young patients, their parents and carers, and professional clinicians were each to play an equal part in the project.
Professor Anne O’Hare continued securing large-scale funding and publishing highly-cited journal articles to the very end of her career.
Throughout that career Anne was very distinctively both a leader but also a team player. Despite a wealth of research experience which led to her being awarded a Personal Chair in Child Life and Health, Anne was always approachable for discussion around a clinical question, colleagues recall.
Anne was the most welcoming and unpretentious professor I have ever known, one said. She was immensely supportive and encouraging in a non-hierarchical way to colleagues, students and trainees alike.
Despite tirelessly pursuing her own research she always found time to support others. Many regarded her as both an inspirational role model and also a mentor. She was generous not only with her time but also with her thoughts.
She shared her ideas so openly and selflessly – which you don't always see in academics said the paediatric neuropsychologist, Kirsten Verity. For many her influence was truly formative during the early stages of their careers, as John Ravenscroft recalled in his tribute:
As a junior research psychologist I moved… to a research post looking at vision and the brain. Two areas I had some (little) knowledge about at the time. At research meetings I met Anne. These were meetings that I can quite honestly say changed my life and my academic career. Anne knew I was floundering around some of the intricate topics that were being debated and so she decided herself to give me a crash course in vision and the brain. These sessions over lunches, meetings, coffees were exceptional. She talked through papers, research designs, method and methodology, current research and future grants. Anne had such a magnificent way of being my academic mentor, it developed into a wonderful friendship. I have been a Professor of Childhood Visual Impairment for over 5 years and indeed my expertise is in vision and the brain and to this day I look back and cannot thank Anne enough.
She loved nothing more than helping others to plot their way forward in their learning, research and careers and – even after she retired she would come home from walking the dog and regale her partner Martin with an account of counselling a PhD student in an encounter in the park. Even in her hospital bed in her last few months she was advising young staff about research and career opportunities.
Yet despite all her immense compassion and consideration for those who knew less than her,
Anne never compromised on facts, which engendered deep respect and loyalty in those who worked with her, said Iain McClure, a child and adolescent psychiatrist who worked with Anne on developing the SIGN guidelines in relation to autism.
She would always hold the group to her own high standards and persist in asking insightful questions. As Professor le Couteur expressed:
With her extensive clinical expertise, academic knowledge and understanding and a rather wicked sense of fun, she could be relied upon to make insightful comments and ask challenging questions that always helped move ideas forward
She applied those high standards to herself. Once when an educational psychologist contended that Anne was not sufficiently qualified or experienced to question their opinion, Anne set about studying Psychology at degree level with the Open University. She did so to build bridges with a characteristic combination of modesty and self-awareness – as well as a determination not to be so dismissed.
Sir John Savill – Regius Professor of Medical Science at the University of Edinburgh – offers a fitting conclusion:
Anne was a superb colleague, a real one-off, and it was an absolute privilege to work with her
Anne O’Hare was a wonderful example to us all of what a doctor scientist can be and can achieve. But she was also a Mum, a sister, a friend, a musician, a traveller, a speaker of French, an animal lover, a wonderer at nature, a passionate gardener, a diligent recycler and ardent composter, and a lover of art, literature and good food. Her contribution and the seeds she has sown will continue to grow but we will always miss her.
At her memorial no fewer than eight encomiums were given – by her sisters, her sister-in-law, colleagues from various field and disciplines, by a patient and his parents, by junior doctors she had mentored and supported financially, and by her loving husband and lifelong companion Martin. The breadth and depth of the tributes was a testimony to the reach and warmth of a most extraordinary woman.