HemiHelp Conference for Professionals, Glamorgan, 26 April 2004
The conference attracted about 80 professional workers including doctors, a large number of occupational therapists and physiotherapists, social workers, local authority representatives, teachers and representatives of interested charities including Scope and Contact a Family.
Dr Cathy White: Current understanding of hemiplegia
Dr Cathy White, paediatric neurologist at the Swansea NHS Trust, gave a general and very thorough review of the current understanding of hemiplegia. She discussed the complex nature of its causes and stressed how much was due to chance. There is no real evidence that there are genetic causes. Parents should not castigate themselves in the belief that the condition results from something that they have done or failed to do. She made no apology for reminding the audience that therapies and even diagnostic procedures should always be governed by a judgement about their usefulness to the child rather than pursued simply for their own sake.
Dr Frances Gibbon: Epilepsy
Dr Frances Gibbon, consultant paediatric neurologist at the University Hospital of Wales, showed that most cases can be successfully treated by medication and ketogenic diets. Most of Dr Gibbon’s presentation was, however, devoted to a desciption of the small number of very severe cases of persistent epilepsy which can be treated by brain surgery. Such cases required very careful diagnosis and selection. She described the advances made in the relevant procedures since their introduction in 1928 and described recent case studies in which surgery had resulted in the very considerable reduction or total elimination of seizures. There had also been very marked improvements in learning and behaviour and a dramatic improvement in the quality of life for children and their families.
Dr Ian Frampton: From Brain to Behaviour
Dr Ian Frampton, clinical psychologist at the Cornwall Partnership NHS Trust, addressed directly the management of the emotional and behavioural problems of children and young people with hemiplegia that had been touched on in the earlier presentations. Entitling his talk “From Brain to Behaviour” he described how it is possible, from an understanding of the development of brain disorder, to develop a predictive model of the dysfunctions with which hemiplegia is associated.
This is turn provides the basis on which programmes of treatment can be developed case by case. He showed how it is possible by early intervention to reduce hyperactivity and emotional distress. It was important to realise that it was often the environment and not the child that needed change and that much could be done by helping parents to understand the condition.
Dr Michelle Barber: Psychological issues
Dr Michelle Barber, consultant paediatrician, developed further some of the themes introduced by Dr Frampton. From her review of the subject she drew the lesson that psychological issues should always have a prominent place on the agenda for consultations. Social skills training was very valuable and schools should ensure that they paid especial attention to the importance of social as well as academic integration. It was very important to provide information for families and to remember that educational provision and health service provision must go hand in hand.
Among the points which emerged from these presentations with special clarity were:
- The importance of remembering that the subjects of treatment are indeed little children and young people with vulnerabilities and weaknesses which they shared with all small human beings
- The importance of understanding that physical and neurological issues must be considered simultaneously with emotional and behavioural concerns.
- That investigation and intervention is more effective when done earlier rather than later in the developmental process
- The importance at all stages of treatment of ensuring that the choice and mode of therapy are derived from a practical assessment of their costs and benefits for the individual child
- The increasing importance, as a child grows older, of basing what is done on children’s own understanding of their needs.