In Honour of Gerry Simon: A Retrospective Appreciation

MENTAL HANDICAP VOL. 20 MARCH 1992

In Honour of Gerry Simon A Retrospective Appreciation

Gerry Simon came to Lea Castle Hospital in 1965 and on the retirement of Dr Alexander Patterson succeeded to the post of Medical Director of Lea Castle Hospital, Kidderminster, and Lea Hospital, Bromsgrove. Dr Simon, as he then was, had a huge enthusiasm and a considerable drive and ability to get things done. He was interested in all aspects of learning difficulty - medical, psychiatric, psycho- logical, educational and social and he had a wonderful ability to reach out to people of all disciplines. His style was not only to challenge, but to share and help others to be creative. He showed how it was possible to build a resource, facility or course to support the individual with a learning difficulty, the family and the many professionals involved when, at that time, there was little help available.

Gerry Simon’s ability to reach out to others not only meant that people locally responded but also people nationally and internationally visited Lea Castle Hospital and Lea Hospital to meet him, discuss and share his views and see what he was doing.

Gerry Simon had many interests but some were of especial importance such as his interest in epilepsy which led to him setting up an EEG Department at Lea Castle Hospital in 1967. This greatly improved the diagnosis and treatment of people with epilepsy. He also recognised the importance of biochemistry to issues of learning difficulty and his early work in relation to chromatography with Dr M. Burns led to the development of a Department of Biochemistry of sufficient stature that the late Dr (Professor) Noel Raine also contributed his skills to the service of people with learning difficulty.

Sensory Handicap was a deep interest and Gerry Simon developed a unit for people with learning difficulty and sensory handicap at Lea Hospital, Bromsgrove, that provided a model of care, looked at the specific difficulties of this group of people, developed special educational resources relevant to their needs and led to publication of his manual of instruction for parents and professionals called ‘The Next Step o n the Ladder’. He not only worked to

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help children and adults with learning difficulty but also recognised and correctly diagnosed many children as being hearing impaired and not mentally handicapped.

In developing the concept of multidisciplinary care, Gerry Simon recognised the skills of many people; he believed that new skills could be taught, that difficult behaviours could be altered and eliminated and that people with learning difficulties were people first to be valued and helped to develop and fulfil their potential. He encouraged nurses to become involved in behaviour modification, to record behaviour and to recognise themselves as agents of behaviour change. The behaviour modification unit at Lea Hospital, Bromsgrove, and the national course for nurses in behaviour modification reflected this concern to effect change in attitudes and services. All along, information was recorded and shared. For many years a multidisciplinary course was held at Lea Castle Hospital that reflected all that was going on and the work at Lea and Lea Castle Hospitals eventually resulted in the foundation of the Institute of Mental Subnormality, to become the British Institute of Mental Handicap with its national contribution through its divisions in England, Wales and Scotland.

With Gerry in charge there was always something going on - psychologists, speech therapists, occu- pational therapists and psychiatrists responded to his drive and challenge and recognised how he enriched their professional contributions to this area of learning difficulty and all it meant to the individual and the family. Everyone was encouraged

I was fortunate to have the opportunity to work closely with Gerry Simon in several different contexts and would like to write about aspects of his work during the 1960s and 1970s.

Borocourt and Smith Hospitals We first met around 1960 when he was appointed

as Registrar to Borocourt and Smith Hospitals, where I was then working as a clinical psychologist. At that time, Borocourt was a reasonably progressive hospital which tried to provide constructive training and rehabilitation programmes for its residents and was beginning to develop community services. Gerry provided invaluable support to staff undertaking this work; he immediately perceived the needs both of staff and residents and worked both collaboratively and as an initiator in improving the quality of life of both.

But it was Smith Hospital, Henley on Thames which provided opportunities for Gerry to make a powerfully effective contribution both as a doctor

to think about what they were doing, to be imaginative, to learn new skills, to look at issues of assessment, development, training, and he himself was always ready to teach nurses, doctors and others while at the same time being able to listen to their ideas. This led to a great feeling that Lea and Lea Castle Hospitals were worthwhile places for them to work and contributed to the overall welfare of the residents.

Gerry Simon believed in allowing people to use their initiatives. He did not mind mistakes if people tried. He encouraged staff to bring their own personalities into the residential areas in terms of creating a home that reflected individual decoration and furnishing and a true sense of belonging. He believed that the hospital was part of the community and from early on was active in discharging residents to worthwhile homes in the community in the form of landlady schemes, group homes and community units.

Gerry Simon was innovative, imaginative, forward thinking, progressive and challenging. His journey was never easy but he responded to his time in such a way that the provision of services for people with a learning difficulty altered and he set the scene that allows people today to be valued more positively, be they people with learning difficulties or professionals working in this area.

EVAN JONES Consultant Psychiatrist at

Lea Castle Hospital

and as a man. Under the dynamic leadership of Gerry O’Gorman, Smith pulsated with debate about the nature and causes of childhood autism, about ways of reaching autistic children, of helping them to relate and learn from others and above all to enjoy human communication at all levels.

Gerry began by looking at the children as a doctor. Starting from the finding that most of them were growth retarded in terms of the available percentile norms, he set about looking for possible causes, eventually finding abnormally high levels oi blood lead for which there was no obvious explanation. He then began to assess their metabolic and neurophysiological functioning, collaborating with Walter Grey in Bristol who was just beginning to work on computerised analysis of EEG data. He also worked with the newly established cytogenetics laboratory in Oxford. At the same time, he was beginning to study the impact of complex sensory and perceptual impairments on children’s development and to work with the Audiology Research Unit

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in Reading in working with children with complex speech and language disorders.

It was an exciting time - there was a new optimism based on research developments and a determination to ensure that the new Mental Health Act would bring about real improvements in the quality of services for people with mental handicap.

National development group and national development team In 1975, disappointed by the slow pace of progress, Barbara Castle, the then Secretary of State for Social Services, announced three major new initiatives - the establishment of the National Development Group (NDG) to advise ministers on policy, planning and implementation; the National Development Team, originally intended to be the ‘eyes and ears’ of the Group which would visit local services and advise on how they could be improved; and the setting up of the Jay Committee on the training of nursing and care staff.

Gerry Simon’s dual appointment as Director of the NDT and as Vice-Chair of the NDG placed him at the centre of gravity of both policy and implementation. The NDG then enjoyed direct access to supportive ministers, professional advisers and senior civil servants. Its members were com- posed of people with day to day experience not only of service planning but of day to day delivery. Above all, the group was multi-disciplinary and prepared to learn from one another as well as from their colleagues.

Gerry Simon himself was an exemplary collabor- ator. Right from the start, he was totally free from the professional imperialism sometimes encountered in our field. He genuinely believed in and practiced an inter-disciplinary or transdisciplinary approach. It was on this basis that he worked both within the NDG and through the NDT to develop the policy of joint planning between health and local authorities and to influence ministers in the direction of joint funding and the transfer of funds to accompany individual residents as they were discharged from long stay hospitals. Similarly, the concept of the community mental handicap team (CMHT), worked out jointly between the NDG and NDT and sketched out in the first two NDG pamphlets and in subsequent national reports from the NDT, are based on an equal partnership between health and social services staff.

Starting in 1976, the NDT began its series of field visits, all of which were initially led by Gerry himself. The team consisted of four virtually full-time associate directors and a large panel of people from all disciplines who could be called on for particular purposes. During the course of these visits the team looked at the whole spectrum of services in a locality and made a particular point of meeting parents and representatives of voluntary organis-

ations. Their meetings with senior management of all the relevant agencies always emphasised the importance of joint planning, with the assistance of joint funding. It was the Team’s constant advocacy of such collaboration that convinced sceptical and suspicious local authority staff to exploit the possibilities opened up by joint funding.

The work of the Team was not without its difficulties or its critics. In the early days, Ministers insisted that reports should be written only for the authorities that had commissioned them and that publication would be counter-productive. The Team was also criticised for making the same recommendations wherever they went - i.e. a jointly planned and funded service, without taking sufficient account of local variations.

Although the recommendations for CMHTs were generally welcomed and led to the setting up of hundreds of such teams across the country, Gerry’s proposals for Community Units were criticised because they were largely seen as an NHS resource and also because such units were too large and potentially too institutional. Gerry argued that such Units were necessary for people with profound and multiple impairments, particularly those who were later described as having challenging behaviour, at least until such time as there was clear evidence that their needs could be met by social services or voluntary agencies and that the necessary support to enable them to live in ordinary housing could be guaranteed.

During Gerry’s Directorship of the NDT, the Team visited nearly every field authority in England, some of them several times, over a period of years, so that they were able to assess the impact and relevance of their recommendations and the obstacles to their implementation.

Although the NDG was abolished as a quango in 1980, the NDT went from strength to strength and still continues under its new director Derek Thomas, based, to my delight, in the Hester Adrian Research Centre at Manchester University.

There can be no doubt of Gerry Simon’s leadership in the field of policy and planning in the 1970s. In particular, his visits to hundreds of field authorities, his honest and frank reports on both the strengths and weaknesses of the services in terms of the quality of life for individuals, their families and the staff who worked with them, left no one in any doubt about the direction in which we ought to go.

Will the climate of the late 1980s and the prospects for the 1990s realise or frustrate that vision?

PETER MITTLER Professor of Special Education and Dean of the Faculty of Education, University of Manchester; formerly Chair of the National Development Group f o r the Mentally Handicapped (1975-1980) and adviser on mental handicap to the Department of

Health and Social Security (1975-1 Y82),



The work of Professor Simon in the field of the deafblind is perhaps less well known than his work with blind people. Nevertheless, he played a major part in the development of the services provided by the National Deafblind & Rubella Association, or SENSE as it is better known these days.

As Secretary of the Association, I first contacted Dr Simon (as he then was) in 1965. At that time, since we had no joy on the education front, we were seeking the help of mental institutions in setting up special units. I met him at Lea Hospital, Bromsgrove and told him about our problems and about the parents of six young deafblind Rubella children in Birmingham who, in desperation, had set up their own play group. He went to see this group of children and immediately responded to our need by taking them for daily training in a ward in the hospital. While six of the ward children went to the hospital school, our children took their place. A teacher from the Condover Hall Deafblind Department was appointed to plan and carry out special programmes, together with a newly qualified teacher from the Perkins Deafblind Department in the USA. As numbers of children in Birmingham grew, Dr Simon organised another small unit in Warwick and began an assessment service which included some out-of-county children. When the 1970 Education Act came into force, the hospital school, then called Perrygrove School, continued the work begun by Dr Simon by having a special deafblind unit. A deafblind unit was also set up in the Alexander Patterson School within the neighbouring Lea Castle Hospital campus. This active support did much to bring about today’s official recognition of the very special educational needs of deafblind children.

Professor Simon’s involvement, as Director, with the National Development Team whose work was to lead to the present policy of getting people out of mental institutions and into the community, has

had a direct effect on the lives of many of our young deafblind adults. Today, the training centres and group homes set up by SENSE house many young adult deafblind people who would otherwise still be in hospitals. With the special help they need now provided, many are beginning to learn to be more independent and to lead a more productive life. At his own special project, the Edgeview Community Unit in Kinver, four places were set aside for deafblind people, one of which my own deafblind daughter was to fill for 14 happy years.

When Professor Simon set up the British Institute of Mental Handicap I was, for a while, a representative for the deafblind on one of the Committees and I was also privileged to be a member of the Committee for the Multiply Handicapped and Blind in which he took an active part. The BIMH publication ‘The Next Step on the Ladder’ (1986), a manual for teaching children with mental and sensory handicaps, of which he was the editor, proved of great value to those working with deafblind children. Its sequel ‘Steps to Independence’ (Best, 1987) was the result of a six year project set up by Professor Simon to look into the needs of people with a combined mental-visual-auditory disability.

As President of SENSE - from 1977 until his death - he attended our AGMs regularly and at the various conferences we held, was often a speaker or chairman of a session. With his death, we lost not only a loved President, but a good friend. His life was devoted to improving the quality of life of handicapped people and we in SENSE will ever be grateful that the deafblind became part of his concern. His warm and caring nature, his recognition of the needs not just of the children, but also those of their parents, his readiness to help whenever approached, will be remembered and greatly missed.

PEGGY FREEMAN Founder member of SENSE

In the late 1960s, Gerry Simon had persuaded the Regional Health Authority and the University of Birmingham to support the establishment of an institute for the study of mental handicap but with a major emphasis on staff training to improve the quality of life of people living in hospitals and to promote ideas of community care and individual teaching. This he did by harnessing the enthusiasm of colleagues towards a common end.

From a local multidisciplinary organisation based in the Midlands, the institute rapidly grew into a national organisation with a vibrant divisional network, first as the British Institute of Mental Subnormality and, more recently, as the British Institute of Mental Handicap. Gerry always claimed that he was surprised by the success of the Institute,

and yet the achievements of BIMH as an independent agency promoting specialised training, service inno- vations and the dissemination of new ideas and examples of good practice are a continuing reminder of the foresight and inspirational leadership Gerry provided.

The first edition of the Institute’s journal, APEX, which subsequently became Mental Handicap, was published in 1973. In his editorial, Gerry wrote prophetically ‘the state of our hospitals and the shortages in the community are evidence of our previously ineffective methods and approach. We should, therefore, cease to regard our critics as offensive intruders and look upon them as interested friends who can play a major role in influencing society - especially as society is by no means as

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sympathetic as we should like and we shall need all the support we can get.’

Gerry was not an easy man to know beyond his professional role. In contrast to this intensely private man was a fearless public man, encouraging others to question the received wisdom of the day, to be innovative in thought and deed, to be sceptical over dogma, to detect empty rhetoric, to see beyond the hospital walls and, above all, to know that things could be different if you were prepared to crack a few eggs and tread on a few toes - especially if

they belonged to the establishment. We may hope that such characteristics were sufficiently well established as guiding principles in the British Institute of Mental Handicap to have a continuing influence on its growth and development in the years ahead.

CHRIS WILLIAMS District Clinical Psychologist, Exeter, and Co- ordinator f o r the South West Division of the British

Institute of Mental Handicap.

An appointment with Professor Simon was an appointment with a friend. I had no idea how distinguished he was until I read his obituary, and I am sure that is just how he would have wanted it.

When we, as parents, were thrust into a life with our handicapped son, it was not easy to find the right person to help. The relief when we eventually found Professor Simon is difficult to describe. The years slipped by and he was always there to listen

and advise, no question was ever dismissed and he always went to great lengths to explain matters in simple terms that parents could understand.

We will always be eternally grateful for his wisdom and patience, helping us through the difficult formative years. He was a great example to us, as I am sure he was to his colleagues - a man sadly missed.

JULIA CROSS

My mentally handicapped son, David, and I first met Gerry Simon in 1969. David was taken into care at Lea Hospital and then Lea Castle shortly afterwards, following the death of his mother.

Over the years I had the pleasure of meeting the ‘Prof.’ on many occasions and my admiration for him and his work never diminished in that time.

Professionally he was only interested in what was best for his patients - officialdom being given short shrift if it interfered with this prime objective.

I am sure that the countless numbers of parents and patients who must have met this caring, gentle man are as saddened as myself at his death.

R. E. LOCKLEY

As parents of a son in Lea Castle Hospital, we would like to say how grateful we are for having known Professor Simon. He had such great ‘feeling’ for the mentally handicapped (and indeed their parents). He was always available to discuss problems and most of all he truly ‘cared’ for the welfare of these unfortunate people. Professor Gerry Simon was indeed a wonderful, caring, man and we are

sure there are many families who are both grateful and thankful for his wonderful attention and professional skills.

Our regards to his devoted family whom we are sure are very proud of all he did for the ‘special’ community. He will always remain in our memory. All our blessings.

KAY and TED PAGE

Before I become a sister on Maple Ward, Professor Simon was just a name of someone to hold in awe. After taking the post of sister I came to know him, and held him in high esteem, both as a man and a consultant caring for the handicapped. Whenever he came to the ward he had time to listen to whatever problems we might be encountering.

He was also always interested in the staff; no one

was ever made to feel they were just a pair of hands. I held him in such high regard I instinctively stood if he walked into the office. He didn’t wish for this, but it was my automatic response to someone for whom I had such respect.

I feel that we all, working in this field, are diminished by his death.

Sister FRANCES RUDD


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In Honour of Gerry Simon: A Retrospective Appreciation