This article is based on an obituary of BILD founder Professor Gerry Simon written by Dr Ashok Roy which appeared in The Independent newspaper on 14 September 1991. The article uses terminology which was current at time of writing, but has changed since then.
The death of Gerry Simon marks the passing away of a historical figure in the often neglected field of learning disabilities
Gerald Bernard Simon was born in Madras and after school in South India joined the University of Madras when the Second World War broke out. Joining the Wiltshire Regiment he first saw action in the North west Frontier Province of undivided India (now Pakistan) developing a fondness for the Pathans there. He subsequently attended a language school in Delhi to learn Japanese prior to an anticipated airlift to Japan. This was interrupted when he rejoined the South East Asia Command to see action against the Japanese in Burma. He remained reluctant to speak about this phase of his life.
Towards the end of the war, he met and married Marjorie who was at the time in the WRNS in Colombo. Prior to his discharge he contracted pulmonary tuberculosis and received treatment in a sanatorium before coming to England with his wife and baby son. A recurrence of tuberculosis caused him to enter a sanatorium for several months.
During this time he matriculated again and applied successfully for an Ex-service grant to enter medical school in Bristol. He qualified in January 1957 and did his early training in Bath and Exeter. It was then that he decided to take up a career in Psychiatry. It was, he said, the only way he could spend some time with his family and maintain direct contact with people. He did his post graduate training in Mendip Hospital in Somerset (1958-1961) and moved eventually to a group of hospitals in Oxfordshire (1961-1965). Here he became interested in the biological roots of autism, epilepsy, psychotic disorders in children and deafness and blindness, interests that he maintained throughout his life. He realised the important role of parents and carers of handicapped individuals and the need to support and guide them in their difficult task. He finally moved to become a Consultant Psychiatrist at Lea and Lea Castle Hospitals near Birmingham in 1965 and was appointed Medical Director in 1967.
For the next two and a half decades Gerry devoted his considerable energy and enthusiasm looking after his patients and their families and developing community based services for people with learning disabilities. The aftermath of the critical enquiries into various mental handicap hospitals in the 1960's gave him the opportunity to push for change towards high quality local mental handicap services as opposed to providing custodial care in distant and overcrowded mental handicap hospitals. He knew that there would never be enough resources in the Health Service to provide an ideal service. He therefore added an element of realism to the debate and suggested a two pronged service. At the centre would be a Multi-professional Specialist Team comprising of Nurses, Paramedical staff, Psychologists, Psychiatrists, and Social Workers who would assess and meet most of the needs of the person with a learning disability and his family in a domiciliary setting.
This Team would be supported and complimented by residential community units which would be built in every Health authority so that comprehensive assessments and rehabilitation programmes could be undertaken locally. Additionally hard pressed families could avail of respite care on demand using beds in the unit. This pattern proved economical and effective compared to hospital care and with some modifications was used throughout the country. Gerry maintained that a top priority of a service was to ease the heavy burden borne by families and carers of severely handicapped people. For him a high quality service had to be flexible enough to meet demands at immediate notice.
Many of these principles were elucidated in his book, "'The Modern Management of Mental Handicap" (1980). When the National Development Group was set up by Barbara Castle at the Department of Health, he became its vice chairman and eventually the first Director of the National Development Team. Through these channels he spearheaded the creation of good community services throughout the country. High standards were set by these bodies and services continually evaluated, a task the Development Team performs to this day.
Realising the important role of educationalists, sociologists and other professionals for the continued development of his patients in particular, and people with learning disability in general Gerry set up the British Institute of Mental Handicap (now BILD) in 1971 and remained its Director until his retirement. This multi-professional organisation has become one of the leading forces for training and educating professionals, carers and clients in professional methods of assessing and meeting the often complicated needs of people with a learning disability.
Gerry, who had lost an eye early in life, had a passionate interest in deaf and blind people with or without a learning disability. He was deeply involved with activities of the National Rubella Association (later known as SENSE). This organisation provides specialist services for deaf and blind people with a learning disability. He was its President from 1978 onwards. His enthusiasm for providing psychotherapy to the deaf blind was infectious. He spent hours in his Saturday outpatient clinic watched by amazed carers and trainees as he communicated freely with deaf blind patients using finger spelling techniques on the palm of their hand. Characteristically modest, he refused to take credit for his numerous successes and attributed any clinical improvement to the strength of character of his patients. It was this modesty and a dislike for personal publicity that lead him to decline an OBE in 1984.
Gerry believed that mental handicap hospitals could be transformed into specialised centres for diagnosis, assessment and treatment of complicated conditions such as mental illness in the people with learning disability and multiple handicaps. He published a refreshingly simple manual called "The Next Step on the ladder" (1973) for professionals and carers dealing with multiply handicapped children.
He maintained an interest in neuropsychiatry performing and interpreting electro encephalograms to find links between epilepsy and behaviour disorders in his patients. He continued to take the rights of psychiatric patients seriously being a member of Mental Health Review Tribunals for nearly 20 years. Using anonymized case histories from his experiences on tribunals he was, at the time of his death, writing a book to inform the lay public about various mental illnesses and how they are treated.
When, in recognition of his achievements he was given a personal Chair in Mental Handicap at the University of Birmingham, he spent the next 12 months getting it converted into a permanent professorship knowing that a Cinderella speciality like mental handicap would be well served by a high academic profile. He did not rest until this was achieved and an excellent successor was appointed. This combination of single minded purpose, humility and loyalty to his patients and those. who worked with him allowed him to achieve so much in so little time. One of his favourite lines about his patients was "You have to do it on their behalf. Remember they pay your salaries!".
Driven by a mission and a vision of a service that was affordable and user friendly, he cut through layers of bureaucracy and often clashed with other professionals. On one occasion he felt that the hospital management was not providing sufficient nurses to staff the wards he shut down all admissions to his hospital explaining to parents and carers of patients that he could not risk providing care with existing staffing levels. The parents rallied behind him and the matter was raised in the House of Commons. Richard Crossman, who was aware of Gerry's integrity supported his cause, leading to more resources being made available and the hospital being re-opened. He reminisced later saying that he was glad not to be working in the new Health service where whistle blowers are dealt with severely.
Gerry spoke with nostalgia about his childhood in India and was fortunately able to visit again just prior to his retirement. He loved Indian cooking and overseas doctors had a special place in his heart. His trainees who are now leading figures in the field all over the world frequently phoned him whenever they had personal or professional problems and usually ended up working out solutions for themselves with Gerry making encouraging noises on the other end!
His warmth and compassion touched patients, their families and the colleagues who worked with him. He lived through his work and when finally ill health forced him to retire from part time work earlier this year he lost the will to fight. He wrote in a passage which was read at his funeral, "I have been living on borrowed time. for the last four decades...". He said on his last day, "Death and I are old friends. We have an understanding". He passed away in sleep a few hours later leaving behind his bereaved wife, son and daughter, 4 grandchildren, scores of professionals who had gained strength from him and hundreds of families who had their lives made more bearable when they met this man who thought that their handicapped child was first of all a human being and they were not guilty and in some way responsible for their plight.
He spent his last day worrying about an ex trainee of his who had been suspended and through his drowsiness and slurred speech caused by terminal renal failure, he managed to advise her to contact the BMA so that she could have adequate representation if disciplinary action was taken against her. Truly here was a caring man who was able to help and encourage those around him till his dying breath.