Why is a unique identification number important for child health?
A full picture of a child’s health, wellbeing and what their care needs are goes beyond their records of contact with the NHS. Research has shown that there is a link between children’s health, education, and social outcomes. However, data collected on children is not routinely shared between these different agencies. This means paediatricians cannot get that full picture, creating a barrier for children to getting the care they need.
Poverty and inequality, for example, impact a child’s whole life, not only their health. This connection is shown in the State of Child Health report across numerous health indicators. Given these links, children and young people are frequently in contact with Local Authority social care services, education, early years provision services and potentially criminal, judiciary or other secure settings. However, none of these points of contact are linked together in terms of data; each agency or service would have their own records, a piece of the jigsaw puzzle making up a child’s health and care. This is a concern frequently raised in local areas, where services working with children are unable to match unique pupil identifiers on the national pupil database with children’s NHS numbers. This limits the ability of early intervention services to reach the most vulnerable children and track children under five across health, social care, and education services.
None of these points of contact are linked together in terms of data; each agency or service would have their own records, a piece of the jigsaw puzzle making up a child’s health and care.
“Because we don’t have a unique identification number, we’re not able to map information about children from different sources in a way that is meaningful,” says Dr Karen Horridge, a disability paediatrician based at the South Tyneside and Sunderland NHS Foundation Trust. Karen would work with other professionals such as special needs coordinators in schools as well as social services. “It’s not all about safeguarding, it’s also about supporting families. It’s really important to share information.” She relays the frustration for families if they feel these barriers to communication and information. “One piece of information can be in an education plan, another in a health and care plan but these plans weren’t shared with the right people because there isn’t the means and the mechanisms to allow that to occur.” Karen emphasises that this is not about breaching individual patient confidentiality. “It’s about putting the child’s needs first and foremost.”
A unique identification number for children will aid the imperative communication needed between agencies, so that the information on an individual child can be mapped out. “Why does this matter? If you think of safeguarding, one of the major problems highlighted in serious safeguarding case reviews is the lack of communication between agencies,” says Karen, “At the NHS, we need to get to where we can build up a picture of individual children’s needs.” Having a consistent way to identify children across all these jigsaw puzzle pieces would allow paediatricians, school nurses, social workers and other professionals working with a child to get the whole picture and provide better care for their needs. This is particularly important for children who have multiple needs and regularly interact with a range of services, or for safeguarding vulnerable children when quick information sharing is vital.
Having a consistent way to identify children across all these jigsaw puzzle pieces would allow paediatricians, school nurses, social workers and other professionals working with a child to get the whole picture and provide better care for their needs.
The barriers and deficits in data sharing in England are being addressed in the Health and Care Bill currently moving its way through Parliament. The Bill will require organisations to share information and remove the legislative barriers that make it difficult to do so. However, the measures it sets out to improve the sharing of information and data only apply to the adult system; children are forgotten in existing data sharing legislation meaning the children’s system faces even greater barriers to sharing information than for adults. The Royal College of Paediatrics and Child Health supports an amendment in the name of Baroness Tyler and Baroness Finlay to rectify these issues in the Health and Care Bill, to ensure better information and data sharing applies equally to children, including through the development of a single unique identifier for children.
The amendment proposes expanding the NHS number as a unique identifier for children to link information and improve communication across multiple services and, fundamentally, help professionals caring for children. “We really need something that follows the child right through, so we don’t have to start from Ground Zero and ask all the questions all over again,” says Karen.
The Royal College of Paediatrics and Child Health supports an amendment in the name of Baroness Tyler and Baroness Finlay to rectify these issues in the Health and Care Bill, to ensure better information and data sharing applies equally to children.
Because every child in England is given an NHS number at birth, the grounding is there to have a unique identifier for children. An example of how this can be done is readily available in Scotland. Scotland adopted a centrally maintained unique identifier numbering system in the 1970s: the Community Health Index (CHI). This means researchers in Scotland can link an array of principal health care datasets for around 95% of the general population — everyone registered with a GP in Scotland will have a CHI number. “Scotland is streets ahead in terms of being able to compare data. In England we can’t do this and it would be so straightforward if we had unique identifiers, the end product being we would get a much more holistic view of individual children’s needs, and also the needs of children at population level,” says Karen.
Creating a map of children’s health across an entire population would allow researchers and policymakers to predict trends and design better services that respond to need.
Creating a map of children’s health across an entire population would allow researchers and policymakers to predict trends and design better services that respond to need. An example of how this works is also seen in the Born in Bradford project. This study is tracking the health and wellbeing of over 13,500 children, and their parents born at Bradford Royal Infirmary between March 2007 and December 2010. Collecting data from routine measures by paediatricians, midwives, school nurses, GPs and health visitors, the Born in Bradford project can understand the many influences that shape our lives and impact our health.
“We’ve been trying to get this sorted for very many years,” says Karen, “and I think COVID-19 has exposed the difficulties. We were not able to share information about which children are clinically extremely vulnerable, which children would have benefited from shielding, and which children would benefit from the vaccine early. Having a unique identification number for children in place would facilitate interagency data sharing and make it easier to identify vulnerable children more precisely.”
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