A History of JIA
Although Juvenile Idiopathic Arthritis (JIA) had been described in England by Frederick Still, a paediatrician at Great Ormond St Hospital, in 1896 it wasn’t until 1946 that a specialised centre for the study of Juvenile Rheumatism was established at the Canadian Red Cross Memorial Hospital in Taplow, Berkshire.
Professor Eric Bywaters, who was working at the Royal Postgraduate Hammersmith Hospital in London at the time, was invited to form a unit for research into the causes and treatment of Rheumatic Fever, which was in the immediate post war years a prevalent and serious illness. He gathered an experienced team of doctors and research scientists from all over the UK and was soon joined by Dr Barbara Ansell. Together, in a very short time, they established ‘Taplow’ as it was known, as the World Centre of Excellence.
Within a very few years Rheumatic Fever more or less disappeared, because of the improved nutrition and hygiene of the population and because the bacterium, which caused the illness, became much less virulent. So, they turned their attention to children with, what was then called, Still’s Disease. It was Barbara Ansell who first recognised that the different patterns of disease had differing courses and outcomes and needed, to some extent, different treatments.
Between the opening of the Unit in 1946 and its closure in 1985 valuable research into the causes, pathology evolution and outcomes of the various patterns of JIA (as it was later renamed in the 1980s) continued.Doctors from all over the world came to learn and contribute and the Medical Team expanded to include ophthalmologists, orthopaedic surgeons and a child psychiatrist.
But what did all this mean to the child with JIA and his or her parents?
The majority of children with JIA were then, as now, looked after at home by their parents, though with frequent outpatient visits to Taplow and to their local hospital paediatrician and physiotherapist. Many, however, would have attended a “School for the Physically Handicapped” rather than the local school round the corner.
A significant number did, however, require inpatient treatment at Taplow and their stay was usually measured in months and sometimes years, rather than days.
The Unit was run rather like a boarding school and whenever possible children went home at holiday time, though very rarely for the full duration of the school holidays. Barbara Ansell realised in the early days of the Unit that her “special children,” as she called them, were of average or above average intelligence and that a good education was essential for them if they were to take a full part in society in later life, particularly as heavy manual employment would not be open to them. The Hospital School was therefore very well equipped and managed with lawyers, authors, doctors, teachers and a professor of English literature amongst the school’s ‘graduates.’
What was child’s daily routine like? Pretty busy! Immediately after breakfast came the exercise class in the gym; followed by one-on-one physiotherapy to stretch joints, prevent loss of range and deformity of the joints and to maintain muscle function. After juice and a biscuit it was off to school, then lunch, then a rest on his or her bed, during which the children lay on their tummies to prevent fixed flexion at the hip and their hips from losing range. After a rest it was back to school again and after that the favourite of the day, the hydrotherapy session in the pool. All the children loved the hydro pool. The warm water relaxed painful muscle spasm and they were able to move well. After formal exercises there was ‘free play’ that, whenever I watched, seemed to consist of a combined effort to duck the physio!
After their evening meal the younger children were helped to prepare for bed. All would wear splints at night, of various sorts, most commonly on knees and wrists, to prevent joints flexing and losing range of movement while sleeping. The older ones did their homework, followed by some “me time” in the PHAB (Physically Handicapped Able Bodied) Club where they were joined by able bodied children from the local town. They played games, snooker was a favourite, or just chilled out. There were trips to the local theatre and cinema in the Unit’s minibus too and visitors were welcomed. It was a very special day when the Canadian Mounties arrived on horseback.
Although the children were well cared for and busy and most seemed content, Taplow could never be home for them. In the early days there were very few drugs available for children. Aspirin and corticosteroids were the only dugs regularly used, and the two major side effects of steroids, growth suppression and osteoporotic fracture, were permanent. A common cause of admission was to gradually reduce the dose of steroid the child was taking and it took months to gradually lower the dose to a minimum. In the early 1970s the non-steroidal anti-inflammatories such as indomethacin, naproxen and ibuprofen became available, but it wasn’t until the Disease Modifying Drug, methotrexate, was introduced in the 1980s that true suppression of the disease was established. Some children in the wards required surgery and in the 1960s the orthopaedic surgeon George Arden began to replace severely damaged hip joints in children under sixteen who had become wheelchair bound. He was succeeded by Malcolm Swann who performed knee and ankle replacements when necessary. In the 1970s surgery on the hand, wrist and small hand joint replacements was introduced by the plastic surgeon Stewart Harrison and continued by David Evans. Regular eye checks were performed to detect the silent eye inflammation, uveitis, by the opthalmologist Jack Kanski, a small number of children requiring surgery to maintain vision.
Despite all the difficulties and pain the children endured and the fact that a large minority had some significant disability in later life, the majority reached an educational standard higher than the national average, earned a living in a job which satisfied them, and many married, had families, and most enjoyed a fulfilling social life.
As Taplow closed in 1985 and Methotrexate was being introduced a new transforming era began. The emphasis of treatment shifted from the physical - physiotherapy and hydrotherapy, splinting and surgery - to a drug based regimen. The disease is now very well controlled in the majority and children are growing normally, free from deformity and functioning well.
By Dr Ann Hall, Consultant Rheumatologist