The theme of this year’s British Academy of Childhood Disability (BACD) annual scientific meeting is maximizing potential for children and young people with sensory impairment. The majority of children with sensory impairment have additional disabilities. For example, Flanagan et al. found that 79% of a community-based sample of children with visual impairment had additional medical problems, with cerebral palsy being the most common. Conversely, we know that sensory impairment is frequently under-diagnosed in children with other disabilities, leading to failure to provide appropriate intervention. Many children with sensory impairment are part of a growing cohort of children with medical complexity (CMC), characterized by Cohen et al. as ‘those with significant and/ or multiple chronic health conditions, functional limitations, and substantial healthcare use’. In 2006, in the USA, CMC accounted for 10% of admissions, 26% of bed days, 41% of costs, and 43% of deaths in children’s hospitals. While there is much to be proud of in the improved survival of infants born preterm and in the novel treatments that have transformed our practice, we have to reflect on the challenges for families who are left to navigate through a fragmented healthcare system, with a different clinician looking after each symptom, system, or body part. As the children and their parents make their way through the emergency department, intensive care, onto the general paediatric ward, and into respiratory, gastroenterology, or orthopaedic outpatients, the standout question is: who should be leading and overseeing their medical care? CMC and their families need a trusted, long-term relationship with a senior clinician who can help them prioritize treatment options and make difficult shared decisions when the child’s health deteriorates. The lack of such an individual is one of many factors that leads to conflict between families and healthcare staff, resulting in stress for all concerned. The impact on families is self-evident, but there is also a cost for staff in terms of low morale, burnout, and attrition. My question is, therefore: to what extent is this ‘our problem’ as paediatric neurologists and neurodisability consultants? The majority of CMC will have a neurological disorder, which is often their primary diagnosis. So, do we have the same status as all the other subspecialists caring for a specific symptom or should we be the ‘first among equals’, leading their care? Specialization is an inevitable consequence of advancing technology. To the primary care physician, the general paediatrician is a specialist, and to the general paediatrician, the paediatric neurologist is a specialist. But we have taken specialization still further with ‘epileptologists’, and specialists in tone management, autism, and sensory impairment. The workload associated with these specialist roles may mean that we are unable to also lead care for a large caseload of CMC; therefore, perhaps medical leadership should be delivered by a new breed of ‘complexologists’. However, I believe that paediatric neurologists and neurodisability consultants still retain something very important: an understanding of the fundamentals of disability and a commitment to maximizing the potential of all children, regardless of the severity of their condition. If we cannot always lead care for our patients, it at least behoves us to be an important player in the team that provides teaching and support for our colleagues in other specialities. We should be able to show them how to value and maximize the life chances of the children with disabilities who will form an increasing part of their clinical caseload.

中文翻译：

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患有医疗复杂性的孩子：每个人都有耐心，没有人负责

今年英国儿童残疾学会 (BACD) 年度科学会议的主题是最大限度地发挥感官障碍儿童和青少年的潜力。大多数有感觉障碍的儿童还有其他残疾。例如，弗拉纳根等人。发现基于社区的视力障碍儿童样本中有 79% 有其他医疗问题，其中脑瘫是最常见的。相反，我们知道有其他残疾的儿童的感觉障碍经常诊断不足，导致无法提供适当的干预。许多感觉障碍儿童是越来越多的患有医学复杂性 (CMC) 的儿童队列的一部分，其特征是 Cohen 等人。作为“那些患有严重和/或多种慢性健康状况、功能受限的人，和大量的医疗保健用途”。2006年，在美国，CMC占儿童医院入院人数的10%、住院天数的26%、费用的41%和死亡人数的43%。虽然在改善早产婴儿的存活率和改变我们实践的新疗法方面有很多值得自豪的地方，但我们必须反思那些不得不在支离破碎的医疗保健系统中导航的家庭所面临的挑战临床医生照顾每个症状、系统或身体部位。当孩子和他们的父母穿过急诊室、重症监护室，进入普通儿科病房，进入呼吸、消化内科或骨科门诊时，突出的问题是：谁应该领导和监督他们的医疗护理？CMC 和他们的家人需要一个值得信赖的，与高级临床医生建立长期关系，该医生可以帮助他们确定治疗方案的优先级，并在孩子的健康状况恶化时做出艰难的共同决定。缺乏这样的人是导致家庭和医护人员之间发生冲突的众多因素之一，从而给所有相关人员带来压力。对家庭的影响是不言而喻的，但员工士气低落、倦怠和流失也需要付出代价。因此，我的问题是：作为儿科神经科医生和神经障碍顾问，这在多大程度上是“我们的问题”？大多数 CMC 都会有神经系统疾病，这通常是他们的主要诊断。那么，我们是否与照顾特定症状的所有其他专科医生具有相同的地位，或者我们是否应该成为“平等中的第一人”，领导他们照顾？专业化是技术进步的必然结果。对于初级保健医生来说，普通儿科医生是专科医生，对于普通儿科医生来说，儿科神经科医生是专科医生。但是，我们已经与“癫痫病学家”以及音调管理、自闭症和感觉障碍方面的专家进一步专业化。与这些专家角色相关的工作量可能意味着我们无法同时领导大量 CMC 病例的护理；因此，也许医学领导力应该由新一代的“复杂学家”来提供。然而，我相信儿科神经病学家和神经障碍顾问仍然保留着一些非常重要的东西：对残疾基本原理的理解和致力于最大限度地发挥所有儿童的潜力，不管他们病情的严重程度。如果我们不能总是领导对患者的护理，那么至少我们应该成为团队中的重要参与者，为其他专业的同事提供教学和支持。我们应该能够向他们展示如何重视和最大限度地提高残疾儿童的生活机会，这些儿童将成为他们临床病例中越来越多的一部分。