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5 surveillance - early years

5.1 Hall 4 sets out a core programme of health checks, screening activity and health promotion for all children from birth to five years. This would be supplemented by additional support for children and families identified as being in need and/or at risk. The reasons for that need of additional support may be wide-ranging and may not necessarily be linked to geographic area or economic status. This issue is considered in more detail in the "Targeting Support" section of this guidance.

The core universal programme of contacts

5.2 The content of the core programme of contacts for all children is set out in Annex 1 and is intended to ensure that every child and family receives a consistent minimum core programme of contacts, wherever they live in Scotland. The core programme in the early years provides opportunities to establish a comprehensive overview of the child's state of health and family circumstances on the basis of routine checks and screening completed by health professionals such as midwives, GPs and paediatricians within the first 10 days following birth, and thereafter by the primary care team. Most examination and assessment is concentrated within the first six to eight weeks of life, with periodic contact and review thereafter.

5.3 Information gathered in this very early period should provide the basis for establishing the nature and frequency of contacts, on the basis of assessed need, co-ordinated by the health visitor and agreed with the family and, where necessary, with other agencies. This should assign the family to one of the models of continuing contact and support described previously in the diagram on page 5, and should also be recorded in the child's own record:

• The core programme.
• The core programme + structured additional support.
• The core programme + intensive inter-agency support.

5.4 All families should receive the core programme of routine contacts for screening, checks, immunisations and health promotion advice and support as set out in Annex 1. Within this programme, some visits to the home are important to ensure a full assessment of the family's needs.

5.5 There are contacts for immunisations at ⁵⁷:

5.6 These contacts should provide opportunities to review with the parent how they are coping and how their child is progressing, and to consider any concerns that the parent may have. By use of service redesign and skill mix in the primary care team, child health and immunisation clinics in primary care settings should be organised to facilitate effective health promotion and enable parents and carers to seek and receive advice by appropriately trained practitioners. This can be supported through integration of immunisation mail shots with the provision of age and stage appropriate health promotion and child development information, together with details of where parents can access advice and support if they have queries or concerns.

5.7 NHS Health Scotland is planning to extend its range of materials on child health and development to include a booklet and DVD on toddler parenting.

Surveillance contact at 7-9 months and 39-42 months

5.8 Analysis of Scottish information systems indicates that children in the most disadvantaged circumstances (post code areas in Deprivation Categories 6 and 7) are far less likely to take up these routine health checks. The most vulnerable children have therefore been least likely to benefit from advice and support from health professionals.

5.9 Health visitors and school nurses are currently involved in providing a range and level of routine child health contacts which some children and families do not need. With the redesign of services outlined in Hall 4 and reflected in this guidance, and with the advent of a range of new services such as NHS 24, the support and advice networks available to parents are improving. Taking these changes into account, we propose that the present contacts at 7-9 months and 39-42 months for routine developmental checks should not be universally provided. This is intended to increase the capacity of health visitors and school nurses to focus on those children and families who are most in need of additional and intensive support.

5.10 Beyond the core programme of contacts outlined in Annex 1, the health visitor should use their professional judgement, as they do currently, to consider the nature and frequency of further contacts with the family for review of child development, according to their needs. This should be negotiated and agreed with each family, and recorded. In addition to the agreed programme of contacts, opportunistic reviews should be undertaken as and when the family makes contact with the primary care team. The need for support may also be identified through other professionals in contact with the child and/or family such as early years settings or adult health services.

Contact at 24 months

5.11 For the reasons outlined above, the present routine developmental contact at 22-24 months should not be universally provided. The primary care team should ensure a universal health promotion and development contact for all families at 24 months, but this should not be provided in the same way for all families - the framework outlined in the diagram on page 5 should be used to determine the nature of the health promotion contact as follows:

Core programme - Written information circulated to all families about child development at this age, with an invitation to contact a designated person in the primary care team if the parent has any worries about their child. Information should be based on a parental checklist regarding the main areas of development in the Parent Held Child Health Record.

Additional support - The primary care team should assess and review the child's progress usually in their home, but a full developmental examination should be offered only if indicated by parental or professional concerns.

Intensive support - Where children have additional support needs, chronic illness or disability, or are vulnerable because of other factors, the health professional should review available child health data and information from other agencies. Thereafter he or she should arrange a home visit with the parent and child for a discussion about the child's progress and a full developmental examination. This should form the basis of discussion and action planning with family, and should be recorded.

5.12 NHS Health Scotland is planning to develop a "checklist", linked to the proposed new toddler parenting booklet, to support the universal health promotion "contact" at 24 months.

Detecting developmental problems

5.13 Some concern was expressed in the consultation exercise, that developmental problems may be missed in children who receive only the core universal programme outlined in Annex 1. Hall 4 suggests that parents, relatives, early years and other health staff detect most problems in the course of their routine contact with the child. However, they need accurate information about the normal range of development and where to seek advice if they have concerns (see Responding to Concerns below).

5.14 Delayed language development may occur in isolation, but may also occur in association with other problems such as conductive deafness, cognitive impairment, behaviour and conduct disorders and attention deficits. It may also be a presenting feature of other serious disorders. Health and early years professionals should therefore be vigilant in looking out for speech and language disorders and other communication and developmental conditions, such as autism, which may become more obvious in the second year of life. Children with neurosensory or conductive deafness may present with delayed speech at this time.

5.15 Hall 4 advises that delay in walking is also common and usually nothing for parents to worry about before the age of 18 months. Children whose delay in walking has an underlying neurological reason are usually identified early on, and normally by 18 months. But there are risk factors to look out for. Boys who appear to be slow in walking, who do not have a family history of bottom shuffling, or who also have evidence of developmental delay, who show evidence of clumsiness or weakness, or have difficulty with running or stairs, should have a creatine phosphokinase estimation to exclude muscular dystrophy.

5.16 Where there is a concern about an individual child's presentation or development, formal assessment to confirm or refute these initial suspicions is desirable. This should be undertaken as part of a more comprehensive clinical assessment involving the network of child development services and should include consideration of referral to a community paediatrician.

5.17 Hall 4 identifies the following services and systems that are required to ensure early identification of disabilities and disorders:

Universal core programme

• Competent, thorough neonatal examination.
• Assessment of family circumstances and need for support within 8 weeks.
• Developmental review and health promotion contacts at agreed ages, with inclusion of both open and structured questions to parents or carers about the child's progress.
• Accurate information to parents and carers about milestones in healthy child development in an accessible format.

Structured additional or intensive support

• Planned follow-up of newborns judged to be at high risk.
• Follow-up of infants and children suffering any form of neurological insult.
• Recognition that parents are often right when concerned about their child's development, coupled with easy access to specialised assessment when needed.
• A holistic approach to assessment that recognises how the impact of several minor problems can be cumulative and cause significant disability.
• Training and support of child care staff to identify possible problems and act appropriately when concerned. NHS Boards should ensure that appropriate training is available.
• Network of health, social and educational services that can provide a prompt, co-ordinated response to referrals within clear care pathways.

5.18 NHS Boards should bring the attention of education authorities to children who are under three years of age and who have a disability. The education authority may make an assessment of the child's needs and provide appropriate additional support to meet these.

Responding to concerns

5.19 Parents are often the first to suspect that something is amiss with their child. Practitioners in contact with children, such as nursery and playgroup staff, also become skilled at identifying the child whose health or development requires further assessment. The universal core programme has an important role in early detection of problems, but identification of new problems cannot rely wholly on universal screening and surveillance. Parents and formal and informal carers in touch with children need accurate information about child development to help them understand the significance of their observations, and about appropriate sources of advice or referral for diagnostic assessment. This should be addressed through joint work between local authorities and NHS Boards, via Community Health Partnerships.

5.20 It is essential that parents know where to go for advice when they have a concern about a child. Health visitors, school nurses and GPs are likely to be the first point of contact when parents have concerns. Health professionals should be equipped to advise and support parents to clarify their worries. They can help parents to decide whether, when, and how to obtain assessment or advice on child development.

5.21 When they seek help, anxious parents must receive an alert and sympathetic response to their concerns. They should not be given reassurance without careful exploration of the basis for their concerns. Professionals who reassure parents inappropriately can contribute to avoidable delay in the diagnosis of disabilities.

5.22 Parents may raise their concerns with staff in their child's nursery, pre-school or school. Education and childcare staff already have some valuable expertise in child development, and this should be enhanced by training so that they too, are able to help parents seek appropriate advice.

5.23 Early years staff should also already be observing, assessing and recording children's progress against the five key curriculum areas on a regular basis, and are well-placed to support review of a child's development. Non-health professionals may require additional training and support to assist them in providing this extremely valuable input. However, there is no assumption that nursery nurses or other pre-school practitioners are to become experts in child health and development. Rather, the proposal is to build on and use more effectively the work that these practitioners are already doing, and to ensure that readily accessible advice is available for staff when they are concerned about a child. Whilst early years staff are in a prime position to encourage children to adopt healthy lifestyles and to identify potential causes for concern, they should raise any concerns with a health or social services professional for follow-up.

5.24 Every NHS Board area has access to multi-disciplinary teams for diagnosis of illness and disability in children. In some cases, these are based in multi-agency child development centres, whilst in others, they are part of community child health services or hospital based paediatric teams. As part of the integrated assessment framework ⁵⁸, NHS Boards will need to work with their partners in local authority children's services to ensure that there are explicit care pathways for parents with concerns about their child's development. These care pathways should be recorded and disseminated to all health, education and social services professionals working in children's services. The care pathway should include local arrangements for referral and access to multi-disciplinary assessment of child development either in a child development centre or in NHS secondary care services. Wherever possible, the pathway should indicate where parents can access sources of general information and support directly, for example through helplines, voluntary organisations and parent support groups.

5.25 Local care pathways should describe referral and access arrangements for assessment and treatment of:

• Problems with movement or walking.
• Problems with vision and/or hearing.
• Communication.
• Developmental delay.
• Emotional and behavioural difficulties.
• Problems with growth, including failure to thrive.

5.26 Local care pathways and protocols should be monitored and evaluated on an ongoing basis to ensure their effectiveness.

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