A role for a global body for paediatric neurodisability

Abstract

‘Prevent the preventable, treat the treatable and provide effective care’ is the essence of the United Nations Political Declaration on Non-Communicable Diseases (Resolution A/RES/66/2), in which all member states undertook in 2011 to do more to tackle these conditions.1 Since then, groups representing people with cancer and diabetes have adopted the resolution to lobby for better care globally, but this has not yet happened for people with neurodisability. Instead they have been incorporated by the World Health Organization (WHO) into an even larger group, ‘mental, neurological and substance misuse disorders’, where mental health issues appear to predominate.2 This may not be in the best interest of those with neurodisability, especially children. In the meantime, there is plenty of recognized best practice. In terms of prevention, immunization programmes and prevention of accidents – brain trauma still being the most important cause of death and acquired disability in children – should continue to be the main priorities. In terms of treatment, early recognition and treatment of neonatal jaundice, or hypoglycaemia, cerebral infections, and prolonged status epilepticus at all ages, are all well known examples. However, as is made clear in the UN Resolution, there is a massive amount still to do. Best practice is not always applied even in well-resourced countries. Many children, especially in resource-poor countries, still suffer avoidable neurological damage. In terms of rehabilitation the move from dogma-based to scientifically-based approaches is to be applauded but, for example, the physiotherapy prescribed or available for a child with cerebral palsy still varies considerably in different countries. To address these issues properly and lobby more effectively in all countries a global body representing neurodisability is essential. Existing organizations could form the anchors for such a body. As delivery of health care to children, adolescents, and adults with neurodisability requires sharing of expertise amongst multiple disciplines, all should be represented, as well as patients and their families.3 Ideally it should be linked to the WHO, to use their authority when advising governments what actions are most useful. The WHO and the World Federation of Neurology have already collaborated in this way, but the result is very adult orientated.4 In addition, at present the WHO understandably only wants to advocate interventions with a high level of evidence, but given the lower levels available especially in many childhood conditions this is too narrow. The functions of such a body should include setting health priorities, advising how outcomes can best be assessed, and identifying areas needing research, which will differ between countries. As well as major unanswered questions such as how to reduce the incidence of preterm birth, with all its associated intellectual and physical risks to children, more modest and achievable aims could include ensuring that clear guidelines are agreed for common conditions and that health care personnel are trained to follow them properly – an approach that has been shown to be effective in adult conditions such as cardiac arrest. Other initiatives can be supported such as the recently launched and very user-friendly website, Treatable-ID.org, which has identified 81 potentially treatable metabolic conditions that can cause intellectual disability.5 With the impetus from the UN resolution it is now time to act.