Mind that child

Dr David Low

Dr David Low, consultant paediatrician and national clinical lead for paediatrics and child health at NHS Connecting for Health, reflects on how the Baby Peter scandal highlighted, once again, the importance of good information sharing to child health and child protection.

He also outlines some of the work that NHS CFH’s Child Health programme has been doing to develop a common core content for children’s records and how some of its other programmes will support quality records and information sharing.

Will the National Programme for IT in the NHS be good for children? The simple and quick answer is yes.

The tragic Baby Peter case has highlighted the importance of good communications and record keeping between the different professionals involved in child protection.

The Care Quality Commission has observed that in this case, medical records were not consistently shared between different health services and that NHS workers did not properly alert social services and police to their concerns. Opportunities that could have saved Baby Peter’s life were missed.

Requirements for child records are different

When child health requirements for electronic health records were first analysed back in 2006, it became clear that proposed and planned developments were of differing pace and content. This was particularly true for clinical and statutory existing and emerging national standards and guidance.

NHS Connecting for Health set up a Child Health Programme in 2007 to map out and make the case for a common core content for child health records. This core content would be in addition to the GP’s record that exists for all children and the hospital records that exist for some.

The work undertaken by the programme has clarified and described the major differences between a child’s record requirements and those of an adult. All children have a universal health promotion, screening and immunisation programme, emphasising health rather than illness.

The programme has also shown there are multiple encounters with different healthcare organisations and professionals, especially in the first five years of life, with considerable demands on emergency and unscheduled care.

Some children require services from other agencies as part of their healthcare and some require statutory services such as becoming a looked after child or requiring a statement for educational needs. The need to share information for the best interests of the child is vital with often no one organisation or professional having the complete picture.

The importance of information sharing

Lord Laming, in 2003 and again this year, has emphasised that government policy and good clinical care stress the importance of information sharing.

A common core content record, readily available for every child and parent or carer and for each professional engaged in delivery of that child’s health would certainly help. Indeed, the basis of a common core record already exists as the Parent-held Child Health Record (PHCHR or ‘Red Book’).

An important question is whether key elements of this should be shared by using the national Spine, for example by including them in the developing Summary Care Record (given that children will already have an SCR containing data drawn from GP and hospital records).

In addition, could the contents of the PHCHR be available for carers on HealthSpace? There are a host of other difficult questions to work through. For example:

• Should all professionals contribute electronically to a single detailed record or keep their own records and just view a shared summary record?
• What is a legal health organisation as this defines information sharing boundaries? A GP, a health Visitor, a practice nurse and a consultant community paediatrician can all be employed by different health organisations that are different legal entities.
• How are safeguarding issues recorded?
• How are the tensions between confidentiality requirements and the need to share information for the best interests of the child resolved?

Addressing complex information needs

So what progress is being made? After wide consultation with professionals and organisations concerned with child health, guidance was produced last June on information and records requirements concentrating mainly on the care of children outside hospital.

This is being refined to produce reference material for primary care trusts and technology vendors to help ensure that child healthcare services are delivered to a uniform and national standard across England.

Work is beginning through the NHS CFH Clinical Assurance Programme to standardise and make sure that tools such as the new World Health Organisation growth charts will be used in a consistent manner in electronic health records.

Meanwhile, the recent reviews by Lord Darzi have re-focussed the NHS on quality and emphasised that information is a vital component in ensuring quality delivery.

Existing NPfIT programmes are already demonstrating that potential to support quality and information sharing:

• The universal use of the NHS Number is essential for a population that is mobile and may change carers and names, yet require universal screening and health promotion and information flow between health organisations. A practical example is the recent combination of bar-coded labels and the Newborn NHS Number to improve the quality of newborn bloodspot screening.
• The ability for primary care records to be transferred electronically within 24 hours, using GP2GP, rather than the three months it used to take previously. This will support the needs of vulnerable children who are being taken into care or who are having to move to different carers.
• Extending End of Life care plans in the SCR to children would support the complex needs of those who have life limiting or life threatening conditions.
• Some existing systems allow and promote sharing of information between GP and community based services. In other areas, the development of non NPfIT data repositories allows some sharing between primary and secondary care.
• Work is in progress to devise standards for child health records based on the Royal College of Physicians Health Record Standards.

Future developments

I expect to see further developments of these and other NPfIT programmes which will contribute to:

• Reducing error and omission and duplication
• Providing consistency in recording information and hence improving consistency of care, especially for vulnerable children
• Enabling recording of community activity, coding, audit of outcomes and eventual possible payment by results.
• Ensuring national requirements are fulfilled.
• Supporting the new child health promotion programme
• Enabling monitoring of the health of the nation’s children via accurate secondary usage data
• Supporting the child health databases
• Improving the quality and availability of information to support unscheduled care
• Enabling information flow between different systems.

I am certain there are many more benefits that will become evident as the programme progresses. However, I see this programme as a really valuable tool not only to deliver improved quality of care but to monitor and demonstrate that care.