Editorial updates. Chapter 1. A Decade of change National Service Frameworks. Since HFAC4 was published in 2003, there have been a number of Government initiatives and publications relevant to child health policy. The most significant was “The National Service Framework for children, young people and maternity services”, published September 2004. http://www.dh.gov.uk/PolicyAndGuidance/HealthAndSocialCareTopics/ChildrenService s/ChildrenServicesInformation/ChildrenServicesInformationArticle/fs/en?CONTENT_ID =4089111&chk=U8Ecln The standards set out in the NSF address a wide range of issues and the individual standards will be mentioned later, in the appropriate chapters. Policy development in Scotland with regard to child health surveillance programmes is discussed in: “Health for all children 4e: Guidance on implementation in Scotland”, published 2005. http://www.scotland.gov.uk/consultations/health/hfac-00.asp A consultation paper, “The National Service Framework for children, young people and maternity services in Wales”, was published in 2004. This is available from the Children and Families Directorate, Welsh Assembly Government, Cathays Park, Cardiff, CF10 3NQ. Every Child Matters. The “Every child matters” series discusses and takes forward a wide range of policies including: early intervention and safeguarding; multi-agency approaches such as Children’s Centres and Extended Schools; improved data sharing across agencies; a Children’s Commissioner. See www.everychildmatters.gov.uk “Every child matters” (Green paper). 2003. “Every child matters”: Next steps. 2004. “Every child matters: change for children”*. 2004. *NB: This document includes a comprehensive list of relevant Government publications (England) up to late 2004 - see final section of the document. Many of the proposals were incorporated into the Children Act 2004 http://www.opsi.gov.uk/acts/acts2004/20040031.htm Every Child Matters proposed the introduction of a national Common Assessment Framework (CAF) as an important part of a strategy for helping children and young people to achieve the five priority outcomes of: • being healthy: enjoying good physical and mental health and living a healthy lifestyle; • staying safe: being protected from harm and neglect; • enjoying and achieving: getting the most out of life and developing the skills for adulthood; • making a positive contribution: being involved with the community and society and not engaging in anti-social or offending behaviour; • economic well-being: not being prevented by economic disadvantage from achieving their full potential in life. This consultation invited comments on a proposed Common Assessment Framework (CAF) from anyone involved in working with children: http://www.dfes.gov.uk/consultations/conDetails.cfm?consultationId=1263 Public health: the Government published a series of documents on public health issues, including many that are relevant to children and young people. “Choosing health: a consultation on improving people’s health”, Spring 2004. “Choosing health: making healthy choices easier”, November 2004. “Delivering choosing health”, March 2005. http://www.dh.gov.uk/PublicationsAndStatistics/Publications/PublicationsPolicyAndGui dance/PublicationsPolicyAndGuidanceArticle/fs/en?CONTENT_ID=4105355&chk=gFT jxL Community development: strengthening local communities and building “social capital” continues to attract interest as a way of improving children’s lives, both in the UK and in the USA: “Promoting healthier communities and narrowing health inequalities: a self-assessment tool for local authorities”, 2004. www.hda.nhs.uk Community Interventions to Promote Healthy Social Environments: Early Childhood Development and Family Housing. A Report on Recommendations of the Task Force on Community Preventive Services. Laurie M. Anderson, Carolynne Shinn, Joseph St. Charles, 2002. http://www.cdc.gov/mmwr/preview/mmwrhtml/rr5101a1.htm Primary care: the role of primary care and general practice in caring for children and young people has come under scrutiny. See http://bmj.bmjjournals.com/cgi/content/full/330/7489/430 Poverty: the Literacy Trust has a useful database of sources on poverty, young carers and related matters: http://www.literacytrust.org.uk/Database/excuse.html Reviews of poverty issues at: http://www.hm-treasury.gov.uk/media/C95/22/childpoverty_chap2_290704.pdf http://www.jrf.org.uk/knowledge/findings/socialpolicy/043.asp Targeting and “Hard to reach” families - see chapter 2. Children’s service plans The Children Act 2004 subsumes many existing planning requirements into a single children and young people's plan (CYPP) that local authorities will be required to have in place by April 2006. Authorities will work with local partners towards the recommendations and targets they set out. The CYPP will cover all the services available to children in a locality, and so the involvement of local partners in the formulation of the plan is fundamental to its success. As well as including local authority services for children and young people, it will also link to plans for other services, including health services, youth justice, voluntary and community services, Connexions and drug action for children and young people. http://www.everychildmatters.gov.uk/strategy/planningandcommissioning/cypp/ Inter-professional collaboration has been reviewed in detail following Lord Laming’s report on the death of Victoria Climbié and recommendations made: “Review of Education and Training on Inter-agency Working” http://www.chssc.salford.ac.uk/scswr/projects/interagency_working.shtml Assessment framework A Common Assessment Framework (CAF) for Children and Young People is a nationally standardised approach to conducting an overall assessment of the needs of a child or young person and deciding how those needs should be met. It has been developed for use by practitioners in all agencies dealing with children and, ideally, where parental consent is given, the CAF will facilitate greater sharing of information between practitioners. Information will follow the child and will be added to over time up a picture over time. Children’s Rights: The relevant NSF standard is Standard 3 (Core standards): “Child, Young Person and Family-Centred Services”. See web link under Chapter 1 - “Decade of change”. The Archives of Disease in Childhood 2005, volume 90 (February edition), carried several articles on the UN Convention and its implications. Pediatrics devoted a supplement to the topic of equity: “Toward equity in child health” supplement to Pediatrics; Sept 2003, 112, number 3, part 2 of 2. Chapter 2. Hard to reach children and families: This topic is attracting increasing interest in several disciplines. Even in the best Sure Start programmes, engaging all eligible families has proved to be very challenging and some remain hard or impossible to reach. This experience reflects the findings in traditional child health surveillance programmes, where there is a steady decline in coverage of the population as children get older and the decline is steeper in the poorest social groups. While this may partly be due to the fact that even in the most deprived areas there are some more prosperous families who may feel that they do not need such services, the evidence suggests that most of these hard to reach families are in fact among the most needy, with an excess of teenage mothers and of parents with problems such as substance abuse, mental illness or violence. USA Head Start data suggest that although early intervention programmes benefit most children, there is a risk that children in the most needy families may perform worse in some programme areas and that early intervention may actually increase inequalities. This may be partly because the more capable families in any locality will access and benefit from any available service more effectively, partly because the intervention programme results in resources being unintentionally diverted from supporting the most needy families, and partly because poor families may be overwhelmed by any additional demands. See for example: National Evaluation of Sure Start - local evaluation findings indicate the problem of engagement: http://www.ness.bbk.ac.uk/findings.asp Several papers discuss the phenomenon. Murray et al described their experiences in a project designed to help women with depression; Barlow et al based their paper on their research into parenting education: Duggan et al reviewed their Hawaii experience and noted that many more parents were lost to follow-up in their early intervention programme than had been anticipated by the staff involved. These parents were particularly those with multiple problems such as alcohol or substance abuse, domestic violence or mental illness. Murray L, Woolgar M, Murray J, Cooper P. Self-exclusion from health care in women at high risk for postpartum depression. J Pub Health Med 2003;25:131-7. Barlow, J., Kirkpatrick, S., Stewart-Brown, S., Davis, H. Hard-to-Reach or Out-ofReach? Reasons Why Women Refuse to Take Part in Early Interventions. Children and Society. 2005. In press. Duggan A, Fuddy L, Burrell L, Higman SM, McFarlane E, Windham A et al. Randomized trial of a statewide home visiting program to prevent child abuse: impact in reducing parental risk factors. Child Abuse Negl 2004;28:623-43. The Head Start experience is reported in “Making a Difference in the Lives of Infants and Toddlers and Their Families: The Impacts of Early Head Start”: available at: http://www.headstartinfo.org/infocenter/ehs_tkit1.htm A more generic approach was taken in a review of inequalities and this too indicated how programmes intended to reduce inequalities might have the opposite effects: Ceci SJ, Papierno PB. The rhetoric and reality of Gap Closing. American Psychologist 2005; 60: 149-160. Chapter 3 The relevant NSF standard is Standard 2 (core standards) - “Supporting Parents or Carers”. See link under chapter 1 - “Decade of change”. Parent education: see section on “Hard to reach” families in chapter 2. Screening for postnatal depression The importance of parental mental illness in general, and depression in particular, is unchallenged, but doubts continue to be expressed about the role of standard screening instruments such as the EPDS. Reasons include concerns about the sensitivity and specificity, a strong suspicion that some parents deliberately offer “false” answers to the screening question for fear of what the consequences might be if they are diagnosed as depressed, and difficulties in adapting the screening process for parents with different cultural and linguistic backgrounds. Shakespeare J, Blake F, Garcia J. A qualitative study of the acceptability of routine screening of postnatal women using the Edinburgh Postnatal Depression Scale. British Journal of General Practice, 2003, 53, 614-619. Austin M-P, Lumley J. Screening for postnatal depression: a review from Australia. Antenatal screening for postnatal depression: a systematic review. Acta Psychiatr Scand 2003: 107: 10–17. Grace SL, Evindar A, Stewart DE. The effect of postpartum depression on child cognitive development and behavior: a review and critical analysis of the literature. Arch Women Ment.Health 2003;6:263-74. Fathers: the role of fathers has begun to attract researchers’ attention, both as caregivers and from the perspective of depression. Depression and mental illness in fathers has been much less researched as compared to mothers, but there is emerging evidence that fathers’ depression does impact on the child, both directly and through reduced support for the mother; conversely, a non-depressed father can to some extent reduce the impact on the child of the mother’s depression. Brid Featherstone. Fathers Matter: A Research Review. Children & Society 18 (2004) pp. 312–319: available at: http://www3.interscience.wiley.com/cgi-bin/abstract/109604879/ABSTRACT Karlen Lyons-Ruth, Rebecca Wolfe, Amy Lyubchik, Ronald Steingard. Depressive Symptoms in Parents of Children Under Age 3: Sociodemographic Predictors, Current Correlates, and Associated Parenting Behaviors In “Child rearing in America”, Eds. Halfon N, Mclearn K, Schuster M. Cambridge University Press, 2002 (e-books 2004). Development: The potential benefits of intervention to enhance children’s life chances are now widely agreed but the impact of large scale programmes is less clear. There are concerns about the maintenance of quality when demonstration projects are taken to a national scale. It is still too early to be confident of the impact of Sure Start, both as a whole and at the level of individual Sure Start Local Programmes (SSLPs), but several themes are beginning to emerge and seem to parallel the experience of USA Head Start programmes. There is wide variability in the content and delivery of SSLPs. The impact seems likely to be modest at best when considered across the whole programme but some individual programmes appear to perform well. By analogy with Head Start experience, success is likely to be at least partly related to good leadership, clear objectives and a focus on particular developmental issues. For a useful review see: Katherine Weare and Gay Gray. What Works in Developing Children’s Emotional and Social Competence and Wellbeing? http://www.wiredforhealth.gov.uk/Word/findings_updated_website.rtf Laurie M. Anderson, PhD, MPH, Carolynne Shinn, MS, Mindy T. Fullilove, MD, Susan C. Scrimshaw, PhD, Jonathan E. Fielding, MD, MPH, MBA, Jacques Normand, PhD, Vilma G. Carande-Kulis, PhD, MS, and the Task Force on Community Preventive Services. The Effectiveness of Early Childhood Development Programs: A Systematic Review. Am J Prev Med 2003;24(3S) Immunisation: a number of studies have now reported no evidence of any link between MMR vaccine and adverse outcomes such as autism. SIDS: Current evidence confirms that exposure to smoke, prone sleeping, excessive bedding that covers the baby’s head, and bed sharing if the parents are smokers or have been drinking alcohol, are the main avoidable risk factors for sudden unexpected death. See: R G Carpenter, L M Irgens, P S Blair, P D England, P Fleming, J Huber, G Jorch, P Schreude Sudden unexplained infant death in 20 regions in Europe: case control study Lancet 2004; 363: 185–91. Parents should not sleep on sofas with their infants. The Foundation for the Study of Infant Death have produced an advice card to reinforce advice for parents: http://www.sids.org.uk/fsid/roomshare.htm Injury: a useful review examined how injury rates relate to social inequalities. “ Injuries in children aged 0–14 years and inequalities: a report prepared for the Health Development Agency”. 2005 www.hda.nhs.uk Breastfeeding: there is growing evidence that both the initiation and the maintenance of breastfeeding can be influenced by various interventions, contrary to earlier defeatist views that women make firm decisions, based on their cultural and social background, long before they are ever pregnant. Useful links to breastfeeding sites: http://omni.ac.uk/browse/mesh/D001942.html Fairbank et al. Systematic review to evaluate the effectiveness of interventions to initiate breastfeeding. HTA 2000; 4: 25. http://www.ncchta.org/execsumm/summ425.htm The effectiveness of public health interventions to promote the duration of breastfeeding Systematic review. 2005. http://www.publichealth.nice.org.uk/page.aspx?o=511625 The debate about the role of weighing to detect excessive weight loss in the first two weeks of breast feeding is unresolved but there are new data that provide up to date centiles for the extent of weight loss, combined with proposals, as yet unproven, as to how best to identify babies at high risk of severe dehydration with dangerous hypernatraemia. P D Macdonald, S R M Ross, L Grant, D Young. Neonatal weight loss in breast and formula fed infants. Arch Dis Child Fetal Neonatal Ed 2003;88:F472–F476 The new centiles are in: Sachs M, Oddie S. Breastfeeding in the balance. 12(3), 296-300. MIDIRS Midwifery Digest Sept 2002, Growth charts for breastfed infants have been published but have not been adopted for routine use. (N.B.: The WHO is developing growth charts for fully breast fed babies). Cole TJ, Paul AA, Whitehead RG. Weight reference charts for British long-term breastfed infants. Acta Paediatr 2002 91 1296-1300 The issue of tongue tie and frenulotomy has attracted considerable attention recently. The hypothesis is that a tight or short frenulum prevents the infant latching on to the breast effectively, thereby making breast feeding painful. There are some strongly held opinions but few hard data and the topic calls for further research. See discussion in the Systematic Reviews referenced above. The topic is to be reviewed in the Archives of Disease in Childhood. Evidence has been presented (but challenged by other authors) that breast feeding for the early weeks of life may offer some protection against later cardiovascular risk factors including obesity: Atul Singhal, Alan Lucas. Early origins of cardiovascular disease: is there a unifying hypothesis? Lancet 2004; 363: 1642–45 Nutrition. The Government is planning to reform the Welfare Foods scheme and draft regulations are currently out for consultation: “Healthy start - consultation on food regulations”. 2005. http://www.dh.gov.uk/Consultations/ClosedConsultations/ClosedConsultationsArticle/fs/ en?CONTENT_ID=4109303&chk=NJPRjI Dental: a good example of a region-wide study on dental health, with analysis and recommendations, is available: The Dental Health of Five-Year-Old Children in the Northern & Yorkshire Region 1999/2000. Northern and Yorkshire Public Health Observatory. http://www.durham.nhs.uk/Pubs/documents/Dental_Report.pdf Decline in obvious decay in children’s permanent teeth. ONS 2003. http://www.statistics.gov.uk/downloads/theme_health/cdh_preliminary_findings.pdf Chapter 5 Pre-school and school services. Children’s Centres Government policy is to bring together pre-school provision in Children’s Centres, applying the lessons learned from Sure Start, and to provide a comprehensive multi-agency service that includes child care, family support and some aspects of health care. Similarly, there are proposals for Extended Schools that will offer comprehensive services for school age children. The impact of these changes on community child health services and on general practice remains to be determined. Children’s centres: http://www.standards.dfes.gov.uk/primary/faqs/foundation_stage/1162267/ Extended schools: http://www.teachernet.gov.uk/wholeschool/extendedschools/ Early education is an important and effective means of improving children’s chances when they start school. Research findings stress the importance of a structured approach and high quality professionally trained staff: The Effective Provision of Pre-School Education [EPPE] Project: A Longitudinal Study funded by the DfES (1997 – 2003) http://k1.ioe.ac.uk/schools/ecpe/eppe/eppe/eppepdfs/bera1.pdf School: An Australian study showed the benefits of changing the ethos of the whole school: Lyndal Bond, George Patton, Sara Glover, John B Carlin, Helen Butler, Lyndal Thomas, Glenn Bowes. The Gatehouse Project: can a multilevel school intervention affect emotional wellbeing and health risk behaviours? J Epidemiol Community Health 2004;58:997–1003. Promoting emotional health and wellbeing through the National Healthy School Standard. 2004. www.wiredforhealth.gov.uk Findings from the National School Readiness Indicators Initiative: A 17 State Partnership. 2005. http://www.gettingready.org/matriarch/ For useful papers and links on early Literacy: www.literacytrust.org.uk Medication in school This is an important and authoritative review about managing medicines in schools and early years settings. DfES 2005. http://publications.teachernet.gov.uk/eOrderingDownload/1448-2005DCL-ENv3final.pdf The UK NATIONAL SCREENING COMMITTEE have recently updated the criteria by which they assess screening programmes: Criteria for appraising the viability, effectiveness and appropriateness of a screening programme Ideally all the following criteria should be met before screening for a condition is initiated: The Condition 1. The condition should be an important health problem 2. The epidemiology and natural history of the condition, including development from latent to declared disease, should be adequately understood and there should be a detectable risk factor, disease marker, latent period or early symptomatic stage 3. All the cost-effective primary prevention interventions should have been implemented as far as practicable 4 If the carriers of a mutation are identified as a result of screening the natural history of people with this status should be understood, including the psychological implications. The Test 5 There should be a simple, safe, precise and validated screening test 6 The distribution of test values in the target population should be known and a suitable cutoff level defined and agreed 7 The test should be acceptable to the population 8 There should be an agreed policy on the further diagnostic investigation of individuals with a positive test result and on the choices available to those individuals. 9 If the test is for mutations the criteria used to select the subset of mutations to be covered by screening, if all possible mutations are not being tested, should be clearly set out. The Treatment 10 There should be an effective treatment or intervention for patients identified through early detection, with evidence of early treatment leading to better outcomes than late treatment 11 There should be agreed evidence based policies covering which individuals should be offered treatment and the appropriate treatment to be offered 12 Clinical management of the condition and patient outcomes should be optimised in all health care providers prior to participation in a screening programme The Screening programme 13 There should be evidence from high quality Randomised Controlled Trials that the screening programme is effective in reducing mortality or morbidity. Where screening is aimed solely at providing information to allow the person being screened to make an “informed choice” (eg. Down’s syndrome, cystic fibrosis carrier screening), there must be evidence from high quality trials that the test accurately measures risk. The information that is provided about the test and its outcome must be of value and readily understood by the individual being screened. 14 There should be evidence that the complete screening programme (test, diagnostic procedures, treatment/ intervention) is clinically, socially and ethically acceptable to health professionals and the public 15 The benefit from the screening programme should outweigh the physical and psychological harm (caused by the test, diagnostic procedures and treatment) 16. The opportunity cost of the screening programme (including testing, diagnosis and treatment, administration, training and quality assurance) ) should be economically balanced in relation to expenditure on medical care as a whole (ie. value for money). 17. There should be a plan for managing and monitoring the screening programme and an agreed set of quality assurance standards 18. Adequate staffing and facilities for testing, diagnosis, treatment and programme management should be available prior to the commencement of the screening programme 19 All other options for managing the condition should have been considered (e.g. improving treatment, providing other services), to ensure that no more cost effective intervention could be introduced or current interventions increased within the resources available. 20 Evidence-based information, explaining the consequences of testing, investigation and treatment, should be made available to potential participants to assist them in making an informed choice. 21. Public pressure for widening the eligibility criteria for reducing the screening interval, and for increasing the sensitivity of the testing process, should be anticipated. Decisions about these parameters should be scientifically justifiable to the public. 22 If screening is for a mutation the programme should be acceptable to people identified as carriers and to other family members. Chapter 7 The National Screening Committee Children’s sub-group provides information on its website: http://www.nsc.nhs.uk/ch_screen/child_ind.htm Screening for congenital heart disease using oximetry has been proposed in the USA and is currently under review in the UK. It is not yet clear how much additional benefit would result when compared with conventional clinical examination. Robert I. Koppel, Charlotte M. Druschel, Tonia Carter, Barry E. Goldberg, Prabhu N. Mehta, Rohit Talwar, and Fredrick Z. Bierman. Effectiveness of Pulse Oximetry Screening for Congenital Heart Disease in Asymptomatic Newborns. Pediatrics 2003 111; 451-455 http://pediatrics.aappublications.org/cgi/content/full/111/3/451?ck=nck The England Department of Health has published guidance on screening: Commissioning And Managing Screening Programmes In The NHS In England. Chapter 8 The National Screening Committee Children’s sub-group provides information on its website: http://www.nsc.nhs.uk/ch_screen/child_ind.htm Growth monitoring recommendations have not changed with respect to the identification of medical disorders affecting growth. The main current issue is Obesity. The best individual and public health approaches to tackle the obesity epidemic continue to stimulate much debate. Emerging evidence suggests that the origins of obesity can be traced back to early infancy. Physical activity is undoubtedly important but there is wide variation in spontaneous physical activity patterns between children. Simple measures like walking to school look attractive and probably have many beneficial effects but cannot be relied on to make much impact on their own. Changes in dietary habits are desirable and there has been much media interest in providing healthier school meals and teaching children to enjoy a wider range of foods. High energy sweet drinks are often available for purchase in schools and many authorities believe that they should be banned from school premises. Not all obese children or teenagers become obese adults and not all obese adults were obese as teenagers or children. In an environment that is conducive to obesity, diet and exercise need to be regarded as lifelong issues. Regular weighing and measuring of school children in order to derive the BMI has been debated, partly as a result of the deliberations of the House of Commons Health Select Committee. A good case can be made for doing this on a representative sample of children on an anonymised basis in order to monitor progress in controlling the obesity epidemic. However, there is more concern about the negative effects of using BMI to advise individual children and parents on their obesity risks and the benefits of such a policy are at best uncertain - as of June 2005 the matter is unresolved. In addition to the generic public health reports listed above, see also: Government Response to the Health Select Committee’s Report on Obesity. 2004. http://www.dh.gov.uk/PublicationsAndStatistics/Publications/PublicationsPolicyAndGui dance/PublicationsPolicyAndGuidanceArticle/fs/en?CONTENT_ID=4098719&chk=9G7 HhP Committee on Prevention of Obesity: Preventing Childhood Obesity: Health in the Balance. Jeffrey P. Koplan, Catharyn T. Liverman, and Vivica A. Kraak, Editors, http://www.nap.edu/catalog/11015.html Sally Ann Lederman; Sharon R Akabas; Barbara J Moore. Summary of the Presentations at the Conference on Preventing Childhood Obesity. Pediatrics; 2004; 114, 4; pg. 1146 Report on obesity - Royal College of Physicians of London: http://www.rcplondon.ac.uk/pubs/brochures/pub_print_SUP.htm Australian review of obesity: Medical Journal of Australia 2005; 182: 130–135 https://www.mja.com.au/public/issues/182_03_070205/bat10421_fm.html Dhriti Jotangia, Alison Moody, Emmanuel Stamatakis and Heather Wardle. Obesity among children under 11. Dept of Health, 2005. http://www.dh.gov.uk/PublicationsAndStatistics/Publications/PublicationsStatistics/Publi cationsStatisticsArticle/fs/en?CONTENT_ID=4109245&chk=WB/AR1 John J Reilly, Julie Armstrong, Ahmad R Dorosty, Pauline M Emmett, A Ness, I Rogers, Colin Steer, Andrea Sherriff for the Avon Longitudinal Study of Parents and Children Study Team. Early life risk factors for obesity in childhood: cohort study. BMJ online: http://bmj.bmjjournals.com/cgi/content/abstract/bmj.38470.670903.E0v1 The British Association for Community Child Health (BACCH) published a series of articles on the current position regarding obesity in its autumn newsletter. There has been very little new work on head circumference measurement. The rate of head growth in the first year is often increased in children who are subsequently diagnosed as autistic - this is an interesting finding on theoretical grounds but has negligible value as a diagnostic clue. Courchesne E, Carper R, Akshoomoff N. Evidence of brain overgrowth in the first year of life in autism. JAMA 2003; 290: 337-44. Bigler ED, Tate DF, Neeley ES, et al. Temporal Lobe, Autism, and Macrocephaly Am J Neuroradiol 2003; 24:2066–2076. Chapter 9 The National Screening Committee Children’s sub-group Electronic Library for Health provides information on screening at http://libraries.nelh.nhs.uk/uk/screening/ Progress in newborn biochemical screening: For an overview and regular updates, and information for parents, (including cystic fibrosis) see: http://www.newbornscreening-bloodspot.org.uk/ MCADD: a study of a screening programme has been commenced. It is early days to assess how it is performing, but it looks promising. There are a number of issues that need to be resolved when introducing such a programme, as described by Dezateux: Dezateux C. Newborn screening for medium chain acyl-CoA dehydrogenase deficiency: evaluating the effects on outcome. Eur J Pediatrics 2003 (December); 162 suppl 1: S25-S28. http://www.springerlink.com/app/home/contribution.asp?wasp=7427bcfad09a4640bbe8f 0d180cb215c&referrer=parent&backto=issue,8,18;journal,30,151;linkingpublicationresul ts,1:100415,1 As predicted, the need for infrastructure to manage positive screening results and cases is proving quite a challenge. A useful parent information sheet can be found at: http://www.bch.org.uk/departments/clinicalchemistry/word/4Advice%20%20Parents%20and%20carers%20(insert)%20Jan%202004.doc Neonatal haemoglobinopathy screening is also getting under way: http://www.kcl-phs.org.uk/haemscreening/ Chapter 10 The jury is still out on the importance of iron deficiency as a public health problem in the toddler age group; however, a systematic review found little evidence of motor or mental impairment in this age group: Sachdev, HPS, Tarun G, Nestel P. Effect of iron supplementation on mental and motor development in children: systematic review of randomised controlled trials. Public Health Nutrition, April 2005, vol. 8, no. 2, pp. 117-132(16) http://www.ingentaconnect.com/content/cabi/phn/2005/00000008/00000002/art00003?to ken=006a1e6cf843c43b354f973f582f206d3f6a4b6e4e395e4e7d634a492f256720297d762 55f7b507b6c7a3838383b2b5e8bcac00ab4 Chapter 11 Audiology services for children have been reviewed and proposals made for further work: www.rcpch.ac.uk Newborn hearing screening is now becoming widely established and accepted. For a progress overview in implementing newborn hearing screening: http://www.nhsp.info/ See also two useful reports on screening in Victoria, Australia: Wake M, Poulakis Z, Hughes EK, Carey-Sargeant C, Rickards FW. Hearing impairment: a population study of age at diagnosis, severity, and language outcomes at 7-8 years. Arch Dis Child. 2005 ;90(3):238-44. http://adc.bmjjournals.com/cgi/content/full/90/3/238 Russ SA, Poulakis Z, Wake M, et al. The distraction test: the last word? J Paediatr Child Health 2005; 41: 197-200. Hearing screening policy offers a good example of how research should be put into practice. Early results suggest that neonatal screening not only works as a screening programme but results in better outcomes for children. See C Kennedy and D McCann. Universal neonatal hearing screening - moving from evidence to practice. Arch. Dis. Child. Fetal Neonatal Ed. 2004;89;378-383 http://fn.bmjjournals.com/cgi/content/full/89/5/F378 Chapter 12 One of the main issues in determining vision screening policy was uncertainty about the extent to which treatment of amblyopia was effective and at what age. This study showed some modest benefit from treatment in children with moderate to severe problems, but did not find any significant difference according to whether or not treatment began before age five: Clarke MP, , Wright CM, , Hrisos S, Anderson JD, Henderson J, , Richardson SR, Randomised controlled trial of treatment of unilateral visual impairment detected at preschool vision screening. BMJ 2003;327:1251 http://bmj.bmjjournals.com/cgi/content/full/bmj;327/7426/1251?ck=nck In another study, by Williams et al, preschool screening at age 37 months was associated with an improvement in outcomes for those who took part, but this was of small magnitude and the authors concluded that their results did not conflict with current recommendations. They note that photorefraction might eventually facilitate earlier detection of refractive errors that pre-dispose to amblyopia but as yet there is no persuasive new evidence for this. Williams C, Northstone K, Harrad RA, Sparrow JM, Harvey I, and the ALSPAC Study Team. Amblyopia treatment outcomes after preschool screening v school entry screening: observational data from a prospective cohort study. Br J Ophthalmol 2003;87:988–993 Screening by orthoptists has been introduced in more districts but it is too early to determine how much this has resulted in improvements in service or outcomes. Screening in school after the age of school entry is still a contentious issue but current recommendations are unchanged. Colour vision Recent evidence supports the contention that colour vision has little importance in educational attainment and occupational choice. Screening for colour vision defects cannot be justified. Cumberland P, Rahi JS, Peckham CS. Impact of congenital colour vision deficiency on education and unintentional injuries: findings from the 1958 British birth cohort. BMJ. 2004;329:1074-5. Cumberland P, Rahi J, Peckham CS. Impact of congenital colour vision defects on occupation. Arch Dis Child. 2005 May 24; (ADC Online First, published on May 24, 2005 as 10.1136/adc.2004.062067) Chapter 13 The relevant NSF standards are: Standard 1 (Core standards) “Promoting Health and Well-being, Identifying Needs and Intervening Early”. Standard 9 - “The Mental Health and Psychological Well-being of Children and Young People” See link under chapter 1 - “Decade of change”. Child and adolescent mental health is still an under-served area, with serious inequalities of access to services due partly to lack of funding and partly to recruitment difficulties. Following publication of the NSF, an important Executive Letter (March 2005) reminds chief executives of their duty regarding CAMHS - “Delivering A Comprehensive Child And Adolescent Mental Health Service By 2006”. This sets targets in three areas: 24 hours, 7 days a week cover Services for children and young people with learning disabilities Services for 16 and 17 year olds See www.dh.gov.uk/PublicationsAndStatistics/LettersAndCirculars/DearColleagueLetters/De arColleagueLettersArticle/fs/en?CONTENT_ID=4106041&chk=sZQY5N A selection of other useful sources on child development and screening: Sure Start commissioned a review of the literature and some educational material about child development. The result may be useful for those working with infants and preschool children. Tricia David, Kathy Goouch, Sacha Powell and Lesley Abbott “Review of the literature to support “Birth to three matters”: A framework to support children in their earliest years”. available at http://www.dfes.gov.uk/research/programmeofresearch/projectinformation.cfm?projectid =13918&resultspage=1 Corrigan et al reported in 1996 that pre-school screening was not effective at identifying children with educational difficulties in school, in spite of a very high population coverage. See Corrigan N, Stewart M, Scott M, Fee F. Predictive value of preschool surveillance in detecting learning difficulties. Arch.Dis.Child 1996; 74:517-21. Sonnander noted that screening did not make a substantial contribution to detection of major disabilities. See Sonnander K. Early identification of children with developmental disabilities. Acta-Paediatrica,-International-Journal-of-Paediatrics,Supplement. 2000; 89:17-23. O'Connor TG. Annotation: The 'effects' of parenting reconsidered: findings, challenges, and applications. J Child Psychol.Psychiatry 2002;43:555-72. Rutter M. Commentary: Nature-nurture interplay in emotional disorders. J Child Psychol.Psychiatry 2003;44:934-44. Developmental disorders are often defined in terms of discrepancy between one sphere of ability and the child’s overall profile, but Dyck et al question the validity of this approach: a study in Wales showed the difficulty in defining coordination disorder with sufficient precision for efficient referral guidelines to be developed. Dyck MJ, Hay D, Anderson M, Smith LM, Piek J, Hallmayer J. Is the discrepancy criterion for defining developmental disorders valid? J Child Psychol.Psychiatry 2004;45:979-95. Dunford C, Street E, O'Connell H, Kelly J, Sibert JR. Are referrals to occupational therapy for developmental coordination disorder appropriate? Arch Dis Child 2004;89:143-7. Language development is influenced both by genes and by environment, with genetic factors playing a bigger role in the slowest 5-10% of children: See Bishop DV. Genetic influences on language impairment and literacy problems in children: same or different? J Child Psychol.Psychiatry 2001;42:189-98. Glascoe FP,.Oberklaid F. A method for deciding how to respond to parents' concerns about development and behaviour. Ambulatory Child Health. 1999; 5:197-208. An ingenious study design used twins who often have mildly delayed language to tease out the role of exposure to language in facilitating language development. See Thorpe K, Rutter M, Greenwood R. Twins as a natural experiment to study the causes of mild language delay: II: Family interaction risk factors. J Child Psychol.Psychiatry 2003; 44:342-55. Parents views on speech and language monitoring and therapy were considered in a useful qualitative study; parents were generally grateful when real problems were identified and assessed but there were also a number of negative responses and worries about medicalisation of development, stigma etc: Glogowska M, Campbell R. Parental Views of Surveillance for Early Speech and Language Difficulties. Children & Society 2004; 18: 266–277 The team who devised the CHAT (a checklist for screening for autism in toddlers) has reviewed the outcomes at age 7 of children identified at age 2 and found significant changes in the pattern of impairment compared to what was expected at 2. Prediction at age 3 was more reliable: see Charman T,Taylor E, Drew A, Cockerill H, Brown J, Baird G. Outcome at 7 years of children diagnosed with autism at age 2. J Child Psychol Psychiat, 2005; 46(5): 500513. Chapter 14 The relevant NSF standard is: Standard 8: “Disabled Children and Young People and Those with Complex Health Needs”. See link under chapter 1 - “Decade of change”. Report by Audit Commission - Services for Disabled Children and their Families. 2003. A hard hitting report: refers to the lottery of provision but also notes examples of good practice: http://www.audit-commission.gov.uk/disabledchildren/ Early support is a DfES programme to improve services for parents with a young disabled child. It is currently undergoing an extensive evaluation. http://www.earlysupport.org.uk/pilot2/index.html Chapter 15 The relevant NSF standard is Standard 5 (Core Standards): “Safeguarding and Promoting the Welfare of Children and Young People”. See link under chapter 1 - “Decade of change”. Area child protection committees By April 2006, these non-statutory bodies will be replaced by statutory local safeguarding children boards (LSCBs) are replacing non-statutory area child protection committees (ACPCs). These will have be heavily based on the pattern of good ACPCs. http://www.everychildmatters.gov.uk/socialcare/safeguarding/lscb/ Responsibilities of Doctors in Child Protection Cases with regard to Confidentiality. February 2004 www.rcpch.ac.uk RCPCH and RCPath. Sudden unexpected death in infancy. Working party report, Chair: Baroness Helena Kennedy, QC. 2004. www.rcpch.ac.uk Chapter 16 Fig 16.1 has been modified in line with new programme. Age Under 12 months 1-10 years Primary immunisations required DTaP(5)/Hib/IPV x 3 at monthly intervals Meningococcal C* DTaP(5)/Hib/IPV x 3 at monthly intervals MMR x 2* Meningococcal C x 1 10 years or more Td/IPV x 3 at monthly intervals MMR x 2* Meningococcal C x 1 Booster immunisations required subsequently As per routine schedule Booster DTaP/IPV or dTaP/IPV (if <10 years, or Td/OPV if >=10 years) should be given at least one year after last dose of primary course. Td /IPV 5-10 years later. Td /IPV after 1 year Td /IPV after a further 5-10 years *Notes: BCG should be given according to local policy. Hepatitis B vaccine may be indicated in some instances Where a child starts their course of meningococcal C vaccine after 4 months old and less than 12 months old, 2 doses of the vaccine should be given The two doses of MMR should be at least three months apart, expect in an outbreak when this can be reduced to one month Key: DTaP, diphtheria/tetanus/acellular pertussis IPV, inactivated polio vaccine; Hib, Haemophilus influenzae type b; MMR. measles/mumps/rubella; Td, tetanus/low dose diphtheria. Unfortunately, immunisation schedules vary enormously between different countries, even in Western Europe. They also vary from time to time and it is not easy to publish a paper guide to them as it would rapidly be out of date. Some information is available from websites of individual National Health Departments and also WHO (http://www.who.int/gpv-surv/sched.xls), but the latter is often very out of date A better education for children in care. ODPM, 2003. http://www.socialexclusion.gov.uk/downloaddoc.asp?id=42 Chapter 17 Personal child health records have been widely supported though their use remains variable. See Hampshire AJ, Blair ME, Crown NS, Avery AJ, Williams EI. Variation in how mothers, health visitors and general practitioners use the personal child health record. Child Care Health Dev 2004;30:307-16. Chapter 18 The relevant NSF standard is Standard 1 (Core Standards): “Promoting Health and Wellbeing, Identifying Needs and Intervening Early”. See link under chapter 1 - “Decade of change”. The schema on page 351 should be replaced by the Child Health Promotion Programme from the NSF. This is available as a separate document - schema NSF.doc . Chapter 19 The relevant NSF document is “Key Issues for Primary Care” See link under chapter 1 - “Decade of change”. Home visiting programmes: do they work? Home visiting by midwives and health visitors, supported by other staff, is generally thought to be part of the solution to engaging hard to reach families, but UK evidence of benefit is scanty. Randomised trials are very difficult to do in an area where the quality of the relationship between professional and client is paramount. The most compelling studies on home visiting are those led by Olds in the USA. These indicate clear benefits for the poorest families, but Olds’ programmes are of higher intensity and quality than can readily be achieved in routine service provision. It is worth noting two points when citing Olds’ studies in support of UK health visiting practice: first, the good results in his programmes apply mainly to the most high risk families living in the USA and using the USA health care system, but the benefits to lower risk families are marginal; second, the home visiting nurses in the programme have on average a caseload of 20-25 families, compared to the UK which is 10-15 times greater. In an important paper that should be read by all Early Years managers, Olds and colleagues reviewed the experience of translating the home visiting programme from research to practice, with over 250 programmes now running. There is evidence that early intervention programmes can quickly degrade when they are no longer run by committed individuals who keep tight control on the fidelity of the programme content or delivered by well trained and highly motivated professionals. They emphasise the importance of a well planned and well funded structure in order to maintain quality and continue to gather data. Their analysis supports the concept of targeting resources in order to get the best results and maximum benefits. Olds DL, Hill PL, O’Brien R. Taking preventive intervention to scale: the nurse-family partnership. Cognitive and behavioral practice 2003; 10: 278-290. Olds et al noted in particular that home visiting by paraprofessionals does not produce such good results even if they are well supervised. Olds DL et al. Effects of home visiting by paraprofessionals and by nurses. Pediatrics 2004; 114, 1560-8. Quality health visiting A number of observational and reflective papers offer some insight into the characteristics of effective home visitors. They examine the content and practice of home visiting and together set out some useful insights into what a quality service should offer: Collinson S,.Cowley S. An exploratory study of demand for the health visiting service within a marketing framework. J Adv.Nurs 1998;28:499-507. Appleton JV. Establishing the validity and reliability of clinical practice guidelines used to identify families requiring increased health visitor support. Public Health 1997; 111:107-13. Cowley S,.Houston AM. A structured health needs assessment tool: acceptability and effectiveness for health visiting. J Adv.Nurs 2003;43:82-92. King L,.Appleton JV. Intuition: a critical review of the research and rhetoric. J Adv.Nurs 1997; 26:194-202 Korfmacher J, O'Brien R, Hiatt S, Olds D. Differences in program implementation between nurses and paraprofessionals providing home visits during pregnancy and infancy: a randomized trial. Am J Public Health 1999;89:1847-51. Knott M,.Latter S. Help or hindrance? Single, unsupported mothers' perceptions of health visiting. J.Adv.Nurs. 1999;30:580-8. Baggens C. What they talk about: conversations between child health centre nurses and parents. J Adv.Nurs 2001;36:659-67. Larson CP. Efficacy of prenatal and postpartum home visits on child health and development. Pediatrics 1980;66:191-7. Davis H,.Spurr P. Parent counselling: an evaluation of a community child mental health service. Journal of Child Psychology and Psychiatry 1998;39:365-76.