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Background

Everyone in England and Wales is assigned a unique NHS number at birth or after the first time they interact with NHS services; and their NHS number will be valid for life. Currently, the NHS number is used to share information on healthcare patients within electronic healthcare records. However, we know that children and young people are frequently in contact with other agencies and services, including: Local Authority social care services, education, early years provision services and potentially criminal, judiciary or other secure settings. Also, children are increasingly mobile and are likely to move across the UK throughout their childhood.

There is a lack of legislation and guidance on exactly what information, when and how it should be shared between agencies. In practice, paediatricians have reported difficulties in exchanging information, which may be a result of poor communication between professionals and/or a lack of interoperable information systems available to effectively share information. 

Through RCPCH &Us, children and young people have repeatedly told us that they don’t want to have to “tell their story twice”. This is particularly important for children who confide in a ‘trusted adult’ (this could be a teacher, doctor, youth worker) and may not feel comfortable telling their story to others.

Use of the NHS number as a common, unique identifier for children will overcome these barriers and enable information to be shared more easily between agencies and services.

What we want

We want to see improved information sharing between professionals working with children and young people. 

Use of the NHS number as a unique identifier for children has the following benefits:

• Reduced risk of incorrect patient identification
• Multi-agency collaboration and decision-making
• Improved care pathways and services for children and young people
• Ease of healthcare transition into adulthood, as the NHS number is for life
• NHS number stays with the patient wherever they move between England and Wales
• Better data collection enables greater research capabilities, which informs understanding of population health needs and service planning / policy development.

These benefits will aid in the provision of high-quality, appropriate care which is delivered at the right time and without delay. The child’s needs can be considered holistically if professionals caring for them have access to information on all aspects which may impact their health and wellbeing. 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.

The NHS number is already used successfully to share information between agencies through the system, which places a ‘flag’ on social care systems if children present in unscheduled care settings. There are also a number of local areas establishing new practices setting up new systems to share information via the NHS number.

Implementing use of the NHS number as a unique identifier is not without challenges, and careful consideration must be given to the following potential barriers:

• Consultation with children and families to ensure consent for sharing data. It is likely that consent would be provided on behalf of the parent / carer and there may be implications on consent for vulnerable children (e.g. those within the child protection system)
• Some ‘missing’ children may not have an NHS number or be represented in other systems (e.g. migrant / home schooled children)
• Lack of common agreement between agencies at which age a young person becomes an adult, which may have implications on the age at which information is shared until.

Guidance and resource will be required to ensure that systems are equipped to receive and use NHS number data. This must be accompanied by GDPR and data governance controls, with national and cross-sector agreement on what, when and how information is shared with relation to the NHS number. The PRSB have created standards and guidance for professionals sharing information, including the , which defines a set of information that can potentially be shared between systems in different sites and settings, among professionals and people using services.

It is recognised that the NHS number is only applicable in England and Wales, as different patient identifier numbers are used in  and Northern Ireland. All UK data systems must be interoperable with each other to ensure effective information sharing even where there are different common patient identifiers for children in each nation.

Policy recommendations

• We support improved information sharing, where it is deemed to have benefits for child health and wellbeing. 
• We support use of the NHS number to underpin and improve data and information sharing between agencies that provide services for children and young people. This will provide professionals with real time access to patient data, improving the care and service they are able to provide for the child. 
• Correct guidance, processes and standards must be developed and adhered to, to ensure that the risks and barriers outlined in this paper are effectively mitigated.

What we are doing

Our Facing the Future: Together for child health standards state that ‘healthcare professionals assessing or treating children with unscheduled care needs in any setting have access to the child’s shared electronic record’.

Within , we call for improved data collection and monitoring of child population health to inform service level change and improvements. The findings specifically highlight how child health outcomes are connected to education and social outcomes.

This position statement is due to be reviewed in June 2023.