The Scottish Child Health Programme: Guidance on the 27-30 month child health review

Delivering the review

74. As previously noted, the Child Health Programme aims to help all children attain their health and development potential. The universal child health reviews are a core element of the overall programme. The reviews provide an opportunity to work with parents to assess children's wellbeing, provide age appropriate health promotion advice, build parenting capacity, identify needs for support, and facilitate early access to effective interventions.

75. The 27-30 month review is an important addition to the existing programme. Children's developmental skills are evolving rapidly at this time, family eating habits are becoming established, and many children are in or are soon to make the transition into early learning and childcare. Many effective interventions to support parents and improve children's outcomes are available.

76. The Getting it right for every child approach provides a useful framework within which to deliver the 27-30 month review⁴. GIRFEC offers an important reminder that the reviews (and all follow on care) should remain focused on understanding and enhancing children's wellbeing and securing the best possible outcomes for every child⁴.

77. The current emphasis on assets based approaches to health promotion⁸⁶ also has important implications for the delivery of the 27-30 month review. An asset based approach to practice involves focusing on children's and parents' strengths and working in partnership to build on these. Parents have a fundamental influence on young children's health and development and hence building parents' capacity for positive parenting, including consistent affection, appropriate boundaries, and encouragement of exploratory play and early reading, should be an important aspect of the review.

78. An asset based approach fundamentally means that the 27-30 month review should not be seen as something that is 'done to' children and parents but rather as an opportunity to work with them, to build their own capacity, and to help families secure the good outcomes that they want for their children. An asset based approach should not be seen as being in conflict with one of the fundamental roles of the 27-30 month review which is to identify concerns at an early stage and hence facilitate prompt intervention. Instead, it is about taking a balanced approach to identifying need, and not immediately 'stepping in to sort things out'. Practitioners' knowledge of the family should indicate, where additional services are required, if this can be done through simple 'sign posting' or if a more 'direct referral approach' is required. Some parents may need more support to access services, due to their individual circumstances. The right approach to communication is also required. Considering how to manage difficult conversations and discussing issues at a pace that suits the parent and child are important to embedding a person-centred approach.

Achieving universal uptake of the 27-30 month review

79. The 27-30 month review is intended to be universal i.e. provided to every child, regardless of their circumstances. Achieving universality is challenging, particularly amongst families that potentially have the most to benefit from the review, but high uptake is essential if the review is to meet the goal of improving children's outcomes and reducing inequalities⁸⁷. Achieving high uptake depends on robust call-recall systems, appropriate methods of invitation, family friendly and accessible timing and location of reviews, and sensitive provision that builds supports for the Child Health Programme across communities. Working with families in local areas to understand their views and needs and tailor processes accordingly will be helpful.

80. All NHS Boards across Scotland use the Child Health Surveillance Programme - Pre-School (CHSP-PS) information system to manage call-recall for the child health reviews. Through its dynamic link to the Community Health Index (CHI) system that maintains an up to date record of GP registrations, the CHSP-PS system provides a very robust mechanism for ensuring that all children receive an invitation to their 27-30 month review, including those that have recently moved area.

81. There are arguments for and against inviting children for the review earlier or later within the 24-30 month window period. The final assessment in the Family Nurse Partnership (FNP) programme³⁸ is undertaken by the Family Nurse at 24 months when the handover of the child and family to universal services takes place. Information gathered at this final assessment should augment any future assessment of the child. As the first clients of the FNP programme graduate from the programme 'good practice' guidance for FNP sites will be developed to ensure that communication at this transition is both robust and client centred.

82. Issuing invitations early allows for the earliest possible intervention if concerns are identified, however the significance of findings may be less clear at the 24 month point due to the relatively high degree of variability in younger children's development, potentially leading to a high number of re-assessments being offered. The CHSP-PS system should therefore issue the first invitation for the review when children attain 27 months. The system should issue up to a further two invitations if children fail to attend after the initial invitation.

83. The CHSP-PS system issues standard invitation letters and as such is unlikely by itself to achieve high review uptake. The CHSP-PS invitations are unlikely to be sufficient for parents with communication difficulties or limited access to mail. Active follow up of families should therefore be triggered when parents fail to attend their 27-30 month review after their first invitation: PHN-HVs should not wait until families have failed to respond to three invitations. The CHSP-PS system can support this by producing regular lists of children at particular ages who have not yet attended their review.

84. Active follow up of families who fail to respond to their first invitation should therefore run in parallel with the ongoing CHSP-PS invitation system and should involve genuine efforts to make contact with families i.e. not just sending an additional letter. Boards should aim to ensure that reviews are completed by the time children attain 30 months. Boards should have clear pathways in place for responding to families that fail to bring their child for the 27-30 month review despite the active invitation process described. These pathways should be congruent with national and local guidance on the 'unseen child'. Achieving high review coverage can be very labour intensive and Boards will need to resource the service accordingly.

85. Universal provision means that the 27-30 month review should be offered to children with known health or development problems in the same way as it is to apparently healthy children. It is recognised that some children with significant health problems may already be under the active review of a wide range of professionals. The PHN-HV remains the GIRFEC Named Person for all pre-school children however and the 27-30 month review may well be valuable for these children by taking a holistic view of child wellbeing and offering wider family support.

Who should be involved in 27-30 month reviews?

86. The 27-30 month review should be a face to face review with the child present. Telephone, written, email, or text contact with parents can be a useful adjunct to the review but by itself these kinds of contact would not be adequate to constitute a 27-30 month review. The increased emphasis on parental reporting (e.g. parent completed questionnaires) rather than direct testing of children when assessing development does not mean that children are not required to be present during the review. Most 27-30 month reviews will be provided on an individual family basis. PHN-HVs may judge that group based reviews are beneficial for some areas or groups of parents. Group based reviews can bring benefits in terms of increasing social contact between parents but providing effective group based reviews requires a great deal of skill, for example being able to systematically observe groups of children at play. If group based reviews are provided, it is essential that all parents are given a meaningful opportunity to raise any concerns they have in private.

87. Traditionally, it has been viewed as the norm for mothers to accompany children to their child health reviews and the involvement of fathers has been paid scant attention. It is now known that fathers are a very important influence on their children's health and development, and their involvement in the 27-30 month review should therefore be encouraged. Promoting the involvement of fathers requires attention to the wording of invitations, having appropriate visual representations of fathers on health promotion leaflets, and ensuring that the timing and location of reviews takes account of the needs of working parents⁸⁸.

88. There is also the question of which professionals should deliver the 27-30 month review. PHN-HVs have lead responsibility for delivery of the universal child health reviews. PHN-HVs often work alongside staff nurses, nursery nurses, and others in skill mix teams and these other colleagues may assume responsibility for delivery of certain elements of the reviews depending on local circumstances. It is of course imperative that staff are always appropriately trained for, and competent in, the roles they are asked to perform, and that they receive adequate supervision.

89. Close liaison will also be required between PHN-HVs and GPs over the delivery of 27-30 month reviews. GPs will be expected to support PHN-HVs for example by providing more detailed medical assessment of children as required and by sharing relevant knowledge of wider family circumstances.

Training and resource issues

90. The 27-30 month review as described in this guidance is new. PHN-HVs and associated staff that have been in post for some time will find some aspects that are similar to the pre-2005 two year review but also there will be new elements such as the updated approach to assessing children's development. Staff who are relatively new in post will have no experience of delivering a universal child health review to this age group. GPs have traditionally had little involvement in the provision of child health reviews at this age. Implementation of the 27-30 month review will therefore have implications for the education and training of existing and future staff.

91. A Community Nursing education sub-group established under the auspices of the Modernising Nursing in the Community programme is actively considering the education and development needs of PHN-HVs and other community nursing staff. This group and NHS Education for Scotland have been kept up to date with this guidance during the process of its development and will be responsive to any future training needs at a national level for undergraduates and the existing workforce. Higher education establishments responsible for the PHN-HV and other relevant curricula will need to consider the implications of the 27-30 month review. NHS Boards will also have a role in responding to local training needs.

92. No new resources have been made available centrally to support the implementation and delivery of the 27-30 month review. For the foreseeable future, Boards will therefore be responsible for directing adequate resources towards the review through local prioritisation and resource allocation processes. When developing this guidance, the evidence regarding the potential impact of different components of the 27-30 month review on children's outcomes has been the primary focus of the Short Life Working Group. Practical considerations have also been borne in mind however: in particular keeping what is asked of the review to a reasonable level to ensure that resource considerations are not overwhelming and the reviews are not so extensive as to undermine parental engagement.

93. It should be recognised that meaningful child health reviews take time. NHS Greater Glasgow & Clyde found that their pilot 30 month reviews (which included universal use of the SDQ and SSLM to assess children's development but no weighing and measuring of children) took an average of 45 minutes each. Boards may wish to bear in mind the work of the Early Years Taskforce, which encourages local partners to bring the totality of their resources to discussions on how best to support preventive and early intervention work, when considering resources for the 27-30 month review.

94. Implementing a 27-30 month review has substantial implications not just for PHN-HVs, and their multi-disciplinary teams, and GPs, but also a wide range of other services including parenting support, specialist health services such as developmental paediatrics and speech and language therapy services, and others such as early learning and childcare and benefits/money management advice services. Careful local needs assessment, planning, and service development will be required to ensure that clear pathways are in place for common issues likely to be identified at the 27-30 month review and that all services have adequate capacity to meet likely demand.

Data and information sharing issues

Information required prior to the review

95. It is good practice for PHN-HVs to have relevant information on the health of children and their family members prior to conducting 27-30 month reviews. Relevant information available from the CHSP-PS and linked national immunisation system (Scottish Immunisation Recall System, SIRS) - that could be routinely fed back to PHN-HVs when children are due to a review - includes information on a child's prior access to preventive services such as neonatal bloodspot screening, neonatal hearing screening, immunisations, the 10 day and 6-8 week child health reviews, and also potentially dental registration and attendance status in areas where that is being fed back through the CHSP-PS system as part of the Childsmile data linkage and feedback project. The child's most recent Health Plan Indicator (PHN-HV assigned overall indicator of need for ongoing professional support) is also available from CHSP-PS.

96. PHN-HVs should also have access to information on recent GP, A&E, and outpatient attendances and hospital admissions through GP records and/or local clinical portal systems. Other relevant information that PHN-HVs should have available to them could include the results of specialist assessments (for example the two year developmental assessments for NICU graduates) and information on child protection concerns. The results of assessments undertaken within early learning and childcare settings may also be very useful.

97. PHN-HVs should consult the Framework⁸⁹ which covers the Accessing of Personal Information on Patients and Staff along with the Intra-NHS sharing accord^90. Access to confidential information may owe duties of confidence and have issues relating to consent. Consideration should be given to the data being processed. It must be adequate, relevant, not excessive, processed lawfully and in line with the data subject's rights. Access must be in line with current NHS Information Governance processes and agreed by identified Caldicott Guardians in line with the NHS Code of Confidentiality^91. In all cases it is important to comply with the Data Protection Act 1998⁹², including its fairness provisions ensuring that data are shared in accordance with the Data protection principles and the Information Commissioner's Office data sharing code of practice⁹³.

98. Adult services have a clear responsibility to consider the implications of parents' health issues on their children, and this is emphasised within GIRFEC. Significant physical ill-health, mental health issues, and substance misuse problems in parents can all have serious implications for children's wellbeing⁹⁴. GPs are likely to be the key source of relevant information on parental health, and PHN-HVs should ensure close liaison with GPs prior to reviews so they are aware of significant issues.

99. If there are concerns regarding the wellbeing of a child the police may have additional relevant information, e.g. information about drugs, alcohol or domestic abuse incidents, and will share information with the GIRFEC named person i.e. the PHN-HV.

Information generated at the review and national minimum dataset

100. Extensive information on children's health, development and wider circumstances will be generated during 27-30 month reviews. Traditionally, PHN-HVs have recorded core information generated at child health reviews on review specific CHSP-PS forms, with additional information recorded in locally held paper-based clinical notes as required. The CHSP-PS forms have then been retained in the clinical notes, with one copy given to the parent for inclusion in the child's Red Book¹⁴ and one returned to the local child health department for keying into the CHSP-PS system by administrative staff.

101. This model is changing, with PHN-HVs in some NHS Boards moving to electronic patient record systems. In these areas, PHN-HVs may directly enter all relevant information generated at the review into the electronic system. It would therefore be beneficial in these areas for electronic data transfer between local systems and CHSP-PS to be developed to avoid the need for duplicate data entry. However data gets into the system, CHSP-PS will remain the ultimate repository of information on completed 27-30 month reviews for the foreseeable future.

102. A national minimum dataset to be returned through CHSP-PS on all completed 27-30 month reviews has been agreed and is presented in the next chapter. It is recognised that all data collection takes time and resource, hence the dataset has been restricted to key items that are necessary to monitor delivery of the reviews and priority public health issues such as early child development, child healthy weight, and children's exposure to second hand smoke. Other information may be recorded locally as required but the national dataset should be systematically recorded on all completed reviews. Supporting definitions and code lists have been included to ensure consistency of recording across areas. Two categories have been included for the Health Plan Indicator (core and additional) in line with Scottish Government policy³ and a definition indicating when an additional HPI should be assigned has been provided.

103. The national dataset will be used by the CHSP-PS National User Group as the basis from which to develop a CHSP-PS 27-30 month review form. This form will then be available to PHN-HVs in areas that are still using paper based records. In areas that are using electronic patient records, it is expected that these systems will be developed to enable recording of the national dataset according to the specified standards and definitions. If children attend their review late, the CHSP-PS 27-30 month form/national dataset should be returned for children aged up to and including 32 months. From 33 months onwards, a CHSP-PS unscheduled review form should be used.

Information sharing after the review

104. All personal information should be collected and handled in line with current legal requirements and best practice guidance, for example the Data Protection Act 1998⁹² and NHS and professional guidance on confidentiality⁹¹. Parents are given information regarding the Child Health Programme (including an outline of what is offered and basic information on how information generated is processed), and the option to opt out, shortly after their child is born (for example through the Red Book¹⁴ and the Scottish Government leaflet 'The Child Health Programme: a guide for parents and carers')⁸⁵. The leaflet 'Confidentiality: It's Your Right' produced by Health Rights Information Scotland⁹⁵ also provides a very useful overview for the general public of how personal information is used within the health service.

105. As discussed above, it is normal practice for the information generated at child health reviews to be recorded in the PHN-HV notes, given to the parent, and entered into the CHSP-PS system. Review findings should also be routinely shared with the child's GP who has an ongoing duty of care to the child. As parents have already been informed about this usual practice, no specific additional consent need be sought during the 27-30 month review. The Scottish Government will keep the Red Book¹⁴ and Child Health Programme leaflet⁸⁵ under review to ensure that the information provided, including that on use of data generated through the programme, continues to reflect current practice.

106. It is likely to be in children's best interests for the findings of the 27-30 month review to also be routinely shared with their provider(s) of early learning and childcare. This will facilitate integration and strengthen relationships and coherent planning between health and early learning and childcare to best meet children's needs. Routine sharing of the findings of 27-30 month reviews with early learning and childcare should therefore be seen as the norm. Such information sharing is likely to be beyond what parents would expect to happen to their child's data however so specific verbal consent should be sought. A variable has been added to the national dataset to help PHN-HVs record that they have obtained consent. If parents withhold consent, their reasoning should be sensitively explored to see if ungrounded fears can be allayed and/or the benefits of data sharing better explained. If parents continue to withhold consent for data sharing, this should be respected unless serious concerns about a child's welfare override the need for consent. If PHN-HVs are planning to share data against parents' wishes, they should follow local guidance. The wellbeing and best interests of the child should always remain the primary consideration.

107. The practicalities of routinely sharing the results of 27-30 month reviews with early learning and childcare will require local consideration. Children may be using a variety of forms of early learning and childcare at the time of their 27-30 month review and they may well change their provider(s) between the time of the review and school entry. It may be that electronic transfer of the data to local education authority systems such as SEEMIS (which could then be made available to wherever the child was attending) could be implemented. Practical issues such as children not having a Scottish Candidate Number allocated until school entry may need to be considered to make this work. Active communication between health and early learning and childcare using the Red Book¹⁴ is also likely to be helpful. Early learning and childcare providers have a duty to keep children's records safe and the Care Inspectorate has a role in assuring that adequate procedures are followed.

Monitoring of review delivery and outcomes

108. The national dataset has been designed to allow proportionate monitoring of the delivery of 27-30 month reviews. It would be beneficial for the coverage of reviews to be routinely published to allow NHS Boards to assess how well they are doing in terms of achieving high uptake. Monitoring coverage by deprivation category as well as by geographical area would also be helpful.

109. Ethnicity has been included in the national minimum dataset. Ethnicity has been defined as 'the social group a person belongs to, and either identifies with or is identified with by others, as a result of a mix of cultural and other factors including language, diet, religion, ancestry and physical features traditionally associated with race'⁹⁶. Ethnicity is usually self defined but it is acceptable for the parents of young children to indicate their ethnicity on their behalf. Individuals may change their chosen ethnicity over time. It is not acceptable for health professionals to 'guess' someone's ethnicity and assign them to a particular category without asking their opinion. An individual's ethnicity may be different from their family origin as assessed in antenatal services and during newborn bloodspot screening when considering haemoglobinopathy risk.

110. Collecting data on ethnicity will allow Boards to assess how many children of different ethnicities are receiving 27-30 month reviews, and to compare how rates of identified problems such as developmental concerns or child unhealthy weight vary by ethnicity. Evidence from the Millennium Cohort Study has shown very substantial inequalities in early child development by ethnicity hence there is a clear need to improve equity of outcome in this area⁹⁷.

111. Public bodies have a duty under the Equality Act 2010⁹⁸ to treat all groups equitably and not disadvantage individuals on the basis of characteristics such as their ethnicity. Unfortunately, ethnicity is not currently recorded on the Community Health Index, hence there is no up to date source of information on the numbers of people of different ethnicities living in different areas. Adding ethnicity to the 27-30 month review dataset will therefore not enable review coverage for different ethnic groups to be calculated but it will nevertheless make a useful contribution towards helping Boards fulfil their responsibilities.

112. It would be helpful for ethnicity to be added to the minimum dataset returned on 10 day and 6-8 week reviews. If ethnicity was already in the CHSP-PS system for a child, parents would then just need to indicate if this had changed at the 27-30 month review. Concerted effort has been made to improve the recording of ethnicity on other health services records such as hospital discharge records⁹⁹. As part of this, useful training materials and further resources have been produced for staff who have limited experience of asking patients about protected characteristic status^100,101.

113. As well as active monitoring of the delivery of 27-30 month groups, the national dataset will allow comparative monitoring of the approach to developmental assessment in different areas, the detection of/occurrence of particular problems, and the actions taken following reviews. Over time, follow up using data linkage will also allow review of longer term outcomes. An active approach to monitoring the effectiveness of the 27-30 month review will be important to ensure it makes the maximum contribution to improving children's outcomes.

Implementation and review of this guidance

114. The initial letter and the subsequent policy update indicating that a 27-30 month review should be introduced were published some time ago^2,3. Several NHS Boards have therefore already started planning, and in some cases delivering, a universal 27-30 month review. Nevertheless, substantial work will be required in all areas to ensure that the reviews provided are in line with this national guidance, in particular developing and implementing relevant local clinical pathways.

115. Further work will also be needed to ensure that the CHSP-PS system (and local information systems in some areas) is updated to enable call-recall for the 27-30 month review and recording of the national dataset on completed reviews. The CHSP-PS National User Group will work with ATOS Origin Alliance (the company that maintains the system on behalf of the NHS) to determine the modifications that will be required. The required e-health funding will then be sought through the e-health Public Health Portfolio Management Group.

116. Mindful of this outstanding work, it is expected that all areas will be providing 27-30 month reviews in line with this guidance, and returning the national dataset on completed reviews, from April 2013. It is anticipated that national comparative monitoring of review delivery and findings would commence from then. It is recognised that this timescale will be challenging for many areas but on balance it is considered feasible.

117. The evidence base underpinning the delivery of the Child Health Programme evolves all the time. The Scottish Government will therefore keep this guidance under review and determine when and how it should be updated.