Dr Janet Carr 1927-2020

Dr Janet Carr died peacefully at home on 17 March 2020, a few days short of her 93rd birthday. Janet was born in China in 1927 to missionary parents and after their return to the UK she was educated England, graduating in Psychology from Reading University in 1948. There she became close friends with Alan and Ann Clarke, whose research in intellectual disability had a significant influence on her own career. Indeed, it was Alan Clarke who persuaded Janet to apply for the course in clinical psychology that had just started at the Maudsley Hospital and she became part of only the second intake for this new profession. At the time, the students were only allowed to complete assessments; treatment was not considered a role for a clinical psychologist!

Janet graduated from the Maudsley in 1951 and later married Dr Eric Carr with whom she had three children, Jim, Nick and Sally. After some years combining part-time clinical work with bringing up a family, Janet joined the MRC Psychiatry research unit at the Maudsley, which was conducting a follow-up study of 6-week old babies with Down Syndrome born in 1964. As part of the assessments, Janet learnt the Bayley Scales from colleagues of Nancy Bayley and the Griffiths scales from Ruth Griffiths. At a time when many families were still being advised to place these infants in institutional care, Janet explored the experiences of mothers on being told that their baby had Down Syndrome and the impact of the different ways in which this message was communicated. The study resulted in her first publication (1970), in Developmental Medicine and Child Neurology. Janet continued to see the families regularly until the babies were 4 years old when she completed her PhD. This was supervised by Jack Tizard, another pioneer in the field of intellectual disability who also became a life-long friend. Her first book, Children with Down's Syndrome, was published in 1975.

In 1971, Janet was appointed as a lecturer at the Institute of Psychiatry and consultant psychologist at Hilda Lewis House, a new out-reach service at the Bethlem Royal Hospital for children with learning disabilities and very disturbed behaviour – including life threatening self-injury. The aim of the unit was to help children and families stay together in the community and, wherever possible, to prevent admission to long stay hospitals. It could be a very challenging place to work, as those of us who were there at the time still remember. However, Janet was almost unfailingly optimistic about the potential for change and many children were able to return home with support. Her much praised book for parents, Helping Your Handicapped Child (1980), is based on her work at that time.

Janet returned to her Down Syndrome families when the children were aged 11 years and she saw them again at 21 years, after moving to St George's Hospital Medical School as senior lecturer in intellectual disability. Post retirement, because of increased awareness of early dementia in Down Syndrome, Janet revisited all her cohort at 30, 35, 45, 47 and finally at 50 years. Her findings did much to enhance knowledge about Down Syndrome and, in particular, highlighted the very positive attitudes and experiences of many families. Her work also emphasised the variability of individual trajectories. Thus, while some people continued to have profound disabilities, others were able to find work and live at least partly independently. The research also documented significant improvements in services over the years. Life expectancy has risen from 12 years in 1951 to approximately 60 years today; most young children with Down Syndrome now attend mainstream infant and junior schools and many adults live with families or in their own homes, mostly with supported living services.

As well as the academic importance of her research, which resulted in many international publications and lectures (Janet's final key-note lecture was at the age of 89 in Melbourne), study participants became to view Janet as a lifelong friend. Many attended a celebration of the 50 year follow-up at the House of Lords, hosted by Dame Sheila Hollins, in October 2014. Over the years her dedication to people with disabilities won several awards, including from Down's Syndrome UK, the Josephine Mills Lifetime Achievement Award, Down Syndrome International, and the OBE in 2015. 

Janet had many other interests beyond her research and clinical work, including a passion for Jane Austen and music, especially Mozart. As a child, Janet became interested in playing the violin and eventually acquired – without initially being aware of its value- a Boulanger violin. When she subsequently took up the viola instead, she gifted the violin to a young student, Sophie Durrant from the Yehudi Menuhin School, and was delighted to see it being played by Sophie at the Royal Opera House, Covent Garden, some years later. Until well into her 80's Janet was an enthusiastic cyclist, skier and tennis player. Her ability at solving cryptic crosswords was legendary and Sally, her daughter, had a special Janet-themed crossword compiled for her by Auracaria for her 80th birthday.

Janet's physical activities were cut short after a serious road accident in 2015, causing multiple fractures. She made a remarkable recovery for someone of her age (88) thanks to her determined perseverance with physiotherapy exercises. Nevertheless, her mobility and strength gradually began to decline and by the end of 2019, although still delighted by visits from friends and family, she became increasingly weary of life. In 2020 her strength waned further and she died quietly in her sleep in mid-March. 

Photo: Dr Janet Carr, OBE, at the wedding of her daughter Sally, August 18th 2018.