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To the root of the problem (with Turaj Ahmad)

Syed has never been able to cope with stress, his family would say. At thirty, he is divorced; he has lost his job several times, had disagreements with his father and walked out of home. He has spent months trying to justify his own actions. He never wanted to be this way- always anxious and unstable. Like others, he had his own plans. ‘I had dreamt up so many things that now seem impossible,’ he mutters. ‘I have had difficulties in coping almost everywhere. It started from home to school, to work and turned out to be a never ending cycle.’

‘And everyone would say, I just need to be more focused, but my mind is not.’

All of this started very early for Syed. At four, his parents thought his anxious behavior were just symptoms of a ‘naughty and restless’ child. He had developed speech a lot later than other children and his parents only thought he would learn soon. And indeed he did. But, there were bigger problems that everyone failed to notice.

At school, Syed was constantly singled out- often labeled as a ‘problem child’. His teachers were tired of him- the fact that he could not concentrate, would become absolutely anxious, and often not respond at all, never made sense to his teachers. He was just a problem child and needed to be punished and detained after school for throwing a tantrum in class.

Syed’s story is nothing new. There are always those children who are just ‘too naughty’, ‘restless’, ‘problematic’ and more. But, increasingly, researchers, doctors and experts in the field of child mental health and neurology point out that the unusual behavior of some children are not a case simple ‘difficult’ children at all. In fact, experts say that many of these are cases cognitive mental disorders and neurological problems that develop from a very early age causing behavioral disorders in them. Left untreated, as a number of studies show, children, either have mental fallbacks or lack developmental skills and proper growth, and end up miserably.

When untreated, mental health disorders can lead to school failure, family conflicts, drug abuse, violence, and even suicide, point out studies at a later age. Indeed, untreated mental health disorders can be very costly to families, communities, and the health care system and there are enough evidences to prove so.

These disorders develop from a number of reasons including child malnutrition, infection, trauma, deprivation and neglect and can often developed while the child is in the mother’s womb and is also related to the mother’s health. Left untreated, these functional limitations can lead to permanent disabilities, virtually impossible to treat at an adult age.

There are many disorders that a child can have from a very early age. These include any anxiety disorder, conduct disorder, attention-deficit/hyperactivity disorder, any depressive disorder, substance abuse, pervasive development disorder, obsessive-compulsive disorder, schizophrenia, Tourette’s disorder, any eating disorder and bipolar disorder.

This is where early detection becomes absolutely imperative. As the first National Congress of the Bangladesh Society for Child Neurology, Development and Disability (BSCNDD) titled ‘Improving Quality of Life of Children with Neurodevelopment Disabilities’ kicked off at the Bangladesh College of Physician & Surgeons (BCPS) last week with a number of professionals involved in the diagnosis, treatment, longer term management and rehabilitation of children taking part, it hammered home the points that neurodevelopment impairments was now a major issue in the country and affected many children which in turns bears a huge cost on the community, that early detection and intervention was necessary and that community awareness and medical expertise could only be spread through the active involvement of the government. Integrating child mental health in the overall health care system is now an urgent necessity.

The need for early intervention

The results of some of the research conducted by the Dhaka Shishu Hospital (DSH) and others shed light on the fact that early intervention can stimulate an improvement in the overall state of children with mental health problems.

A study titled ‘Profile of Child Mental Health: Problems attending the child development centre of a tertiary hospital in Bangladesh’, conducted by a team of doctors at Dhaka Shishu Hospital, headed by Dr Naila Zaman Khan, a professor of child neurology, stressed on the fact that mental health is an essential part of child development and neurodisability service. Better opportunity provided for early intervention in a multidisciplinary approach can result in better parental compliance for treatment of their children.

‘Children who are often termed as problematic at school, actually need help and support of the teachers the most and there is a desperate need for professionals to handle such cases,’ says Dr Ann Le Couteur, professor of child and adolescent psychiatry, New Castle University, on her recent visit.

Steps need to be taken to identify which nutrients can help improve brain development and function during the early childhood and gestation, with the goal of improving cognitive development and decreasing neuron-psychiatric disorders. This is exactly what the study ‘The effect of early Human Diet on Caudate volumes and IQ’ by a team headed by Elizabeth B Isaacs, MRC Childhood Nutrition Research Centre, Radiology and Physics Unit, University College London Institute of Child Health, United Kingdom, showed- that human brain structure can be influenced by early nutrition.

‘Besides this, there is also need for special emphasis on caring pregnant women; this is also a crucial time for a child’s development. Specifically, in Bangladesh, we have a number of women who are not only denied the basic care during pregnancy, but they lack proper nutrition, mental support and much more,’ says Dr. Naila.

Why the government needs

to be involved

In Bangladesh, there are about 18 Shishu Bikash Kendra (SBK), a centre were children with neurodevelopment disorders are diagnosed and treated, the first being set up by Shishu Hospital.

‘In the past fifteen years a body of health professionals, including child neurologists, child care physicians trained in neurodevelopment, developmental therapists, child psychologists, psychosocial counselors and neurophysiologists have been trained within the country and in key institutions in the UK and other countries,’ says Dr Naila also secretary general of the BSCNDD.

According to the statistics, the number of children with functional limitations in the country adds up to approximately 50 lakh. The members of the society believe that the necessary resources to treat such children are available in the country, however, the presence of proper institutions are lacking, which is where the government must step in.

‘We have the experience and technology to reach out to the grassroots and therefore it is necessary to scale up services and set up child development centers in hospitals which we urge the government to provide,’ says Dr Naila.

‘The amount of time that goes into looking at one child is a lot and the whole process of breaking the news to parents who get to know that their children have challenges to face is also difficult and hence time-consuming. And that is why we need SBK centres at all major hospitals across the country,’ adds Dr Naila.

‘A proper place for diagnosis, a centre, is required with trained manpower especially in the rural areas of the country,’ adds national professor M R Khan.

‘It is difficult to differentiate between mental disorder and developmental impairments, and that is why it is important that for day-to-day clinical practice, there is a broad based assessment than just a single focus,’ adds Dr Ann.

‘Most often development impairments tend to multidimensional and complex,’ says Dr Helen McConachie, Professor of Child Clinical Psychology, New Castle University, who has worked extensively on autism. ‘You do not have a set of specific symptoms that will tell you that this child has this developmental or mental problem and hence it is important that there are programs that ensure step by step, friendly environment, with skilled professionals.’

‘It is also important to understand that it is not just important to ensure that only professionals work, but everyone in the community must work together,’ says Dr Ann. ‘In a country like Bangladesh, the risks are very high and it can impact the society. Professionals working with families need to be able to recognise problems of distress and disruption that children and adolescents face during development and understand the factors that are more likely to increase or decrease the risk of emotional and behavioral difficulties.’

The government response

The government is yet to integrate child mental health and bring it dominantly within the national system where by schools, centers and other relevant stakeholders will have sufficient expertise to ensure proper development and ability to handle cases of mental disorder and development of a child.

Zahurul Alam, president, National Forum of Organisations Working with the Disabled (NFOWD), pointed out that as a result of some flawed policies implemented by previous governments regarding rules of business many children with disabilities had been filtered out of the educational institutions with only four percent of such children attending schools.

However, he lauded the measures taken by the current caretaker government regarding the issue. ‘A big gap between the activists and the recipients has been in existence but hopefully as a result of the Convention of Rights of Children with Disability signed in December 2007 which will come into effect soon, this gap will be bridged and disabled children will come through,’ he said.

‘Several hundred children are born in the country with neurological problems that make them permanently disabled,’ said Dr. A.M.M. Shawkat Ali, adviser to the ministry of health and family welfare. ‘There are two stings of support to deal with this issue that can come from the donor agencies and the corporate sector that is in terms of providing funds and of helping raise awareness,’ he said.

While dealing with children is difficult as it is, it is more so with children with functional limitations and according to the Health Adviser, only a limited number of people are aware of the facts regarding disabilities especially among the rural population.

The health adviser affirmed that the infrastructure in the health sector has improved while urged the BSCNDD to take a holistic approach to the task in hand. ‘This program needs to be strengthened to meet all needs to prevent neurological problems and it is important to institutionalise to sustain these services.’

According to Shawkat, the government is committed to work on child disability that is a curse for not only a family but also for the state. ‘Prevention is better than cure and therefore the government would look forward to receiving a proposal from the society,’ he concluded.

The way forward

The first National Congress of the Bangladesh Society for Child Neurology, Development and Disability was concluded with the adoption of the 13-point Dhaka Declaration to protect children from the hazards of early child malnutrition, infection, trauma, deprivation and neglect.

Dr Naila announced the Dhaka declaration with some other major recommendations: to set up Shishu Bikash Kendras in all major divisional and district public hospitals, training in multiple disciplines deemed necessary for optimum short- and long-term management of children with neuro-developmental impairments and functional limitations, and teaching of certificate, diploma and degree courses related to child neurology and development.

The declaration also includes transfer of advancement technology through national regional and international collaboration, updating knowledge and skills through seminars, symposiums, and congresses on a regular basis at the district, divisional, national, regional and international levels.

‘We believe that posterity will deem the congress to be a milestone for public health as our aim is to establish the need for child development centers across major public hospitals in Bangladesh,’ says Dr Naila.

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