Safeguarding children – understanding the roles of Named and Designated Professionals

Safeguarding is everyone's responsibility. To be able to discharge these responsibilities there needs to be a robust and supportive multi-agency safeguarding system to ensure children and young people reach their optimum potential and best outcomes. Designated and Named Professionals are key parts of such a system. This paper describes the roles and responsibilities of Designated and Named Professionals, how they support the system and safeguarding as well as the key attributes they require to undertake these roles. It describes the challenges they face but also the rewarding aspects of their involvement. The readers are urged to reflect on why a career in this field is intellectually stimulating and worth considering. Both authors have enjoyed their roles as Designated Doctors in Safeguarding Children.     

Community-based family and carer-support programmes for children with disabilities

Children and young people (CYP) with disabilities face multiple challenges and unmet health needs. There is considerable variability in quality of health services across the UK for these children. Families report that they experience lack of information or misinformation about health, social care and education of their child. They also highlight a desire to engage with other families of CYP with disabilities. There is growing evidence that community-based group interventions in under-resourced settings are effective at improving quality of life for both CYP with disabilities and caregivers. Few similar interventions or evidence exists in the UK. This article provides an overview of relevant evidence and, using cerebral palsy as an exemplar, discusses the potential for group-based programmes for parent carers in the UK. Groups would aim to address information needs, support providers to deliver evidence-based care, and thereby improve the health and wellbeing of CYP with disabilities.     

Initial health assessments for unaccompanied asylum-seeking children: advice and good practice

There were 3,762 unaccompanied asylum-seeking children (UASC) in the UK in 2021. UASC often have significant physical and mental health needs. They suffer from conditions linked to extreme poverty, such as malnutrition and tuberculosis. The proportion of UASC with complications related to their vision, dental health, skin, sleep, and mental health is high. They are also at increased risk of sexually transmitted diseases, including blood-borne infections. UASC become ‘looked after’ by their local authorities and therefore should have Initial Health Assessments (IHAs) in the same way as other children also in the care of their local authorities. IHAs are comprehensive and holistic health assessments, and as such are ideal for identifying previously unrecognized or unmet health needs of UASC and for providing clear health plans on how these health needs should be managed. This article will provide an overview of the national statistics and demographics of the UASC population, describe the demographics of the local UASC population within Birmingham and highlight their health needs, and then provide advice on how to conduct IHAs in the most effective and sensitive way for this particularly vulnerable group of children in care.     

Unmet need for therapy services, assistive devices, and related services: data from the national survey of children with special health care needs.

OBJECTIVE: To estimate the prevalence of unmet needs for therapy services, vision and hearing care or aids, mobility aids, and communication aids and to investigate the association between predisposing, enabling, need, and environmental factors and unmet needs. METHODS: Using the National Survey of Children with Special Health Care Needs, we generated national prevalence estimates and performed bivariate and logistic analyses, accounting for the complex survey design. RESULTS: Nationally, the prevalence of unmet needs ranged from 5.8% among children with special health care needs (CSHCN) with a reported need for vision care or glasses to 24.7% among CSHCN with a reported need for communication aids. In logit analyses, CSHCN without insurance coverage were significantly more likely to have a reported unmet need for therapy services (adjusted odds ratio [OR]: 2.08, confidence interval [CI]: 1.39-3.12), vision care or glasses (OR: 3.94, CI: 2.64-5.86), and mobility aids (OR: 5.17, CI: 1.86-14.37). Children in families at or below 100% of the federal poverty level were significantly more likely to have a reported unmet need for vision care or glasses (OR: 4.51, CI: 2.86-7.12) and hearing aids or hearing care (OR: 3.61, CI: 1.70-7.65). For each of the services studied, more-severely limited children were significantly more likely to have an unmet need reported. CONCLUSION: Our findings demonstrate that a minority of CSHCN have unmet needs for therapy services, assistive devices, and related services. Parents of children with more-severe ability limitations were more likely to report having unmet needs. Our findings highlight the importance of insurance coverage in ensuring access to therapy services, assistive devices, and related services.     

Looked after Children and Young People in England: Developing Measures of Subjective Well-Being

In England, about 69,000 children and young people are in care, primarily because of abuse and neglect. The impact of maltreatment can be long lasting and the quality of substitute care the child receives has a significant impact on children’s developmental recovery. Yet little is known about how looked after children and young people view their own well-being. Do they identify the same elements as important to their wellbeing as do children in general population and how might their well-being be measured? Here, we describe the development of an on-line survey to measure the subjective well-being of children in care. Eighteen focus groups were held involving 140 children and young people to understand their perceptions of what was important to their wellbeing. Although there were domains of well-being, such as the importance of relationships, that were held in common with children in the general population, looked after children identified other domains and their emphasis differed. Children emphasised the importance of relationships with foster carers, social workers and siblings and of being able to trust the adults in their lives. Unlike children in the general population, looked after children thought that having a coherent account of their histories and knowing the reason for being in care was crucial. The study demonstrated that children as young as 6 years old were able to provide meaningful responses about their well-being. The challenge for practice is to respond to those views and not leave children disillusioned that their views have made no difference.     

Health insurance and children with disabilities

Few people would disagree that children with disabilities need adequate health insurance. But what kind of health insurance coverage would be optimal for these children? Peter Szilagyi surveys the current state of insurance coverage for children with special health care needs and examines critical aspects of coverage with an eye to helping policy makers and clinicians improve systems of care for them. He also reviews the extent to which insurance enhances their access to and use of health care, the quality of care received, and their health outcomes. Szilagyi begins by noting that nearly 9 percent of children with disabilities are uninsured for all or part of a year and that coverage even for many such children with insurance is inadequate--either not meeting their needs or not adequately covering the costs of care. By one estimate, nearly two of every five special needs children are either uninsured or inadequately insured. The author finds strong evidence that health insurance improves access to health care. Children with disabilities who are insured are more likely than those who are uninsured to have a primary care provider, to be able to reach a specialist, and to have access to supporting services. They also have fewer unmet needs for medical and oral health care and receive care more quickly. The bulk of the evidence shows that insurance improves quality of care for children in general and for children with disabilities. Parents of insured children with chronic conditions are more satisfied with their children's primary care, medications, specialty care, and overall health care than are parents of their uninsured peers. A handful of studies of specific diseases have found insurance to be related to improvements in quality measures, such as more doctor visits and greater continuity of care. In conclusion, Szilagyi stresses the need to provide adequate health insurance to all children with disabilities and to develop a set of best practices in health insurance to cover important services needed by this population. To that end, implementation of the federal health care reform act, including the mandate for insurance coverage, is important. He also urges support for medical home and other quality initiatives and better ways to monitor quality and health outcomes to ensure that children with disabilities receive cost-effective and equitable care.     

Transition to adult services

The lack of focus on young people as a group with particular healthcare needs in medical training and the health service underpins the difficulty that we have experienced as a profession in improving transition in the UK. This article discusses current progress towards improving training in young people's health in the UK, the evidence base for transitional care in young people with chronic conditions with interventions that focus on staffing, service delivery and young people, a practice based approach for transitional care in young people with learning difficulties and complex needs, the need for monitoring and evaluation of transitional care, and the challenge of funding.     

Unmet mental health need and access to services for children with special health care needs and their families.

OBJECTIVES: Studies suggest that children with disabilities or serious health conditions are vulnerable to mental health problems due to adjustment and limitation problems. The aim of this study was to examine rates and predictors of unmet mental health need among children with special health care needs (CSHCN) and their family members and to determine if race/ethnicity and language are associated with unmet need for the child and family members who have a mental health need attributed to the child's special needs. METHODS: Data are from the 2001 National Survey of Children with Special Health Care Needs, a nationally representative sample of CSHCN. RESULTS: Rates of unmet need were higher for CSHCN and family members of CSHCN with a chronic emotional, behavioral, or developmental problem (EBDP) compared to CSHCN with a mental health need but not a chronic EBDP. In multivariate analysis controlling for condition impact and demographics, among CSHCN with a chronic EBDP, African-American children had greater odds of unmet need (OR 1.60, 95% CI, 1.12-2.28), and family members of Hispanic children with a Spanish language parent interview had greater odds of unmet need compared to others (OR 4.48, 95% CI, 1.72-11.63). Lacking a personal doctor or nurse was associated with higher odds of unmet need for CSHCN with and without a chronic EBDP. CONCLUSION: Parents reported prevalent mental health needs of CSHCN as well as family members. Given the importance of family members to the care of CSHCN, research on racial/ethnic disparities in access to perceived needs should focus on children and their family members.     

Profiling health and health-related services for children with special health care needs with and without disabilities

ObjectiveThe aims of this study were to profile and compare the health and health services characteristics for children with special health care needs (CSHCN), with and without disabilities, and to determine factors associated with unmet need.MethodsSecondary data analysis of the 2005–2006 National Survey of Children with Special Health Care Needs was conducted. The sociodemographics, health, and health services of CSHCN with and without disabilities were compared. Multivariable logistic regression was employed to examine factors associated with unmet need for health services.ResultsChildren from minority racial and ethnic groups and children living in or near poverty were over-represented among CSHCN with disabilities, compared with other CSHCN. Statistically higher percentages of CSHCN with disabilities had behavioral problems (39.6% vs 25.2%), anxiety/depressed mood (46.1% vs 24.0%), and trouble making/keeping friends (38.1% vs 15.6%) compared with other CSHCN. Thirty-two percent of CSHCN with disabilities received care in a medical home compared with 51% of other CSHCN. CSHCN with disabilities had higher rates of need and unmet need than other CSHCN for specialty care, therapy services, mental health services, home health, assistive devices, medical supplies, and durable medical equipment. The adjusted odds of unmet need for CSHCN with disabilities were 71% higher than for other CSHCN.ConclusionCSHCN with disabilities had more severe health conditions and more health services need, but they less commonly received care within a medical home and had more unmet need. These health care inequities should be amenable to policy and health service delivery interventions to improve outcomes for CSHCN with disabilities.     

Palliative care for disabled children and young people

Palliative care for disabled children and young people embraces holistic, high quality, evidence-based care, recognition and timely management of symptoms, recognition and discussion with the multidisciplinary team and with families about the possibility of dying and care and support through life, death and bereavement.Systems are being piloted across the UK to collect data about who and where children and young people with palliative care needs are and to ensure robust funding mechanisms are established for provision of care in an equitable way.Decision-making within a legal and ethical framework is paramount in this area of clinical practice, along with clinical networking within care pathways to ensure care delivered is of the highest standard.     

SEND for the paediatrician: children and young people with special educational needs and disabilities

Disabled children and young people, including those with special educational needs, have rights to the same high-quality health care as anyone else would expect to receive. Whilst policies and practices vary over time and across jurisdictions, maintaining a structured approach and broad vision should ensure that each and every need of all children and young people is identified, accurately described using clearly understandable terms, documented and communicated to all who need to know in the child or young person’s wider team. Visible needs are more likely to be addressed in the health care plan and services for visible needs are more likely to be intelligently designed and delivered. Paediatricians can equip themselves to better assess the acute and ongoing needs of disabled children and young people, using freely available resources and by networking with the multidisciplinary team with expertise in the field. This short review provides some helpful definitions and gives a structure for how to proceed. It also offers signposting to some useful resources and advice to paediatricians and healthcare professionals working with children with Special Educational Needs and Disabilities (SEND).     

Prevalence and characteristics of children with special health care needs

BACKGROUND: Children with special health care needs (SHCNs) are an important population from health care services, economic, and policy perspectives. However, until recently, no national data on their prevalence and health care service needs that use a commonly accepted definition have existed. OBJECTIVE: To provide national estimates of the number of children with SHCNs and their characteristics, including an assessment of how well their needs are being met. SETTING: The United States. PARTICIPANTS: Interviews were conducted by telephone with the families of 38 866 children with SHCNs younger than 18 years using the State and Local Area Integrated Telephone Survey platform developed by the Centers for Disease Control and Prevention, Atlanta, Ga. MAIN OUTCOME MEASURES: Prevalence of SHCNs, demographic and socioeconomic correlates of SHCNs, access to care, satisfaction with care, and impact on the family. RESULTS: An estimated 12.8% of US children experienced an SHCN in 2001. Prevalence was highest among boys, school-age children, and children in lower-income families. A substantial minority of these children experienced unmet health needs (17.7%) or lacked critical elements of family-centered health care (33.5%). The impact on families was pronounced, as 20.9% reported their child's health care caused financial problems, and 29.9% reported cutting back or quitting work because of their child's condition. These adverse child- and family-level impacts were concentrated among low-income and uninsured children with SHCNs. CONCLUSIONS: Children with SHCNs and their families represent an important underserved population. In addition, substantial disparities are present in access, satisfaction, and family impact.     

Special needs children with speech and hearing difficulties: prevalence and unmet needs

ObjectiveThe purpose of this study was to establish prevalences and sociodemographic characteristics associated with parent-reported speech and hearing difficulties among children with special health care needs (CSHCN); determine unmet needs for therapy, hearing aids, and communication devices; and examine the association between unmet needs and resources such as health insurance, early intervention/special education, and a medical home.MethodsData were analyzed for 300 910 children without special health care needs and 40 723 CSHCN from the 2005–2006 National Survey of Children with Special Health Care Needs. Prevalence, sociodemographic characteristics, and unmet needs for 7132 CSHCN with speech difficulties and 1982 CSHCN with hearing difficulties were assessed. Logistic regression was used to determine the associations between unmet needs for therapy or hearing/communication devices and resources for addressing needs for therapy, hearing, and communication aids.ResultsThe parent-reported prevalence of speech difficulty among CSHCN in the general population was 2.9% and approximately 20% among all CSHCN, in contrast to the lower prevalence of hearing difficulty (0.7% and 5%, respectively). Relative unmet need was greatest for communication devices and least for hearing aids. The strongest association with reducing unmet needs was having a medical home, and the most significant aspect of medical home was having effective care coordination.ConclusionsHaving a medical home is significantly associated with fewer unmet needs for therapy and hearing/communication devices among CSHCN with speech and hearing difficulties. Care coordination may constitute an important factor that allows the primary care provider to link with services that CSHCN with communication problems require.     

SEND for the paediatrician: children and young people with special educational needs and disabilities

Disabled children and young people, including those with special educational needs, have rights to the same high-quality health care as anyone else would expect to receive. Whilst policies and practices vary over time and across jurisdictions, maintaining a structured approach and broad vision should ensure that each and every need of all children and young people is identified, accurately described using clearly understandable terms, documented and communicated to all who need to know in the child or young person's wider team. Visible needs are more likely to be addressed in the health care plan and services for visible needs are more likely to be intelligently designed and delivered. Paediatricians can equip themselves to better assess the acute and ongoing needs of disabled children and young people, using freely available resources and by networking with the multidisciplinary team with expertise in the field. This short review provides some helpful definitions and gives a structure for how to proceed. It also offers signposting to some useful resources and advice to paediatricians and healthcare professionals working with children with Special Educational Needs and Disabilities (SEND).     

The Effects of Health Insurance and a Usual Source of Care on a Child’s Receipt of Health Care

IntroductionAlthough recent health care reforms will expand insurance coverage for U.S. children, disparities regarding access to pediatric care persist, even among the insured. We investigated the separate and combined effects of having health insurance and a usual source of care (USC) on children’s receipt of health care services.MethodsWe conducted secondary analysis of the nationally representative 2002-2007 Medical Expenditure Panel Survey data from children (≤ 18 years of age) who had at least one health care visit and needed any additional care, tests, or treatment in the preceding year (n = 20,817).ResultsApproximately 88.1% of the study population had both a USC and insurance; 1.1% had neither one; 7.6% had a USC only, and 3.2% had insurance only. Children with both insurance and a USC had the fewest unmet needs. Among insured children, those with no USC had higher rates of unmet needs than did those with a USC.DiscussionExpansions in health insurance are essential; however, it is also important for every child to have a USC. New models of practice could help to concurrently achieve these goals.     

Case-control study of the health of those looked after by local authorities.

AIMS: To assess the health needs and provision of health care to school age children in local authority care. METHODS: A total of 142 children aged 5 to 16 in local authority care, and 119 controls matched by age and sex were studied. Main outcome measures were routine health care, physical, emotional, and behavioural health, health threatening and antisocial behaviour, and health promotion. RESULTS: Compared with children at home, those looked after by local authorities were significantly more likely to: experience changes in general practitioner; have incomplete immunisations; receive inadequate dental care; suffer from anxieties and difficulties in interpersonal relationships; wet the bed; smoke; use illegal drugs; and have been cautioned by police or charged with a criminal offence. They also tend to receive less health education. They were significantly more likely to have had a recent hearing or eye sight test, and reported significantly less physical ill health overall. CONCLUSIONS: The overall health care of children who have been established in care for more than six months is significantly worse than for those living in their own homes, particularly with regard to emotional and behavioural health, and health promotion. In contrast to uncontrolled observational studies we have not found evidence of problems with the physical health of these children.     

Children's unmet need for mental health care within and outside metropolitan areas

BackgroundRural communities experience a lack of pediatric mental health providers. It is unclear if this leads to greater unmet needs for specialty mental health services among rural children.MethodsData from the 2016–2019 National Survey of Children's Health were used to identify children aged 6–17 years with a mental health condition. Caregiver-reported need and receipt of specialty mental health care for their child (met need, unmet need, or no need) was compared according to residence in a Metropolitan Statistical Area (MSA).ResultsThe analysis included 13,021 children (14% living outside MSAs). Unmet need for mental health services was reported for 9% of children, with no difference by rural-urban residence (p = 0.940). Multivariable analysis confirmed this finding and identified urban children as less likely to have no need for mental health services, compared to rural children (relative risk ratio of no need vs. met need: 0.79; 95% confidence interval: 0.65, 0.95; p = 0.015).ConclusionChildren with mental health conditions living in rural areas (outside MSAs) did not have higher rates of unmet needs for specialty mental health services, but they had lower rates of any caregiver-reported needs for such services. Further work is needed to examine caregivers’ demand for pediatric specialty mental health services.