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Red book optional diagram developed to identify genetic condition

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A book for recording children’s health and development has been updated with an optional new section to help identify a genetic condition, which may also stop mistaken cases of abuse being reported.

The new, voluntary part of the red book, officially known as the personal child health record, includes a body diagram that alerts professionals to multiple birth marks, which could signify neurofibromatosis type 1 (NF1).

“It’s baffling that something so simple that can save lives isn’t included in the red book as standard”

Carly Jim

It also includes a referral process for diagnosing NF1 and other conditions – and is hoped it will alert professionals to the difference between birthmarks and bruises, which can sometimes lead to cases of child abuse being reported.

NF1 can lead to a malignant peripheral nerve sheath tumour, which is a type of cancer. It is estimated that people with NF1 have a 10% chance over their lifetime of developing this type of tumour.

The extra red book section has been developed by academics at Manchester Metropolitan University and the Childhood Tumour Trust charity.

Families in East Sussex will be the first to have the diagram included as an insert within the red book – but the new feature is not required by the government as a standard element.

Those behind the new illustration said they had reached a “brick wall” lobbying ministers to ensure every child’s red book included the image.

Instead, they said they hoped that by health visitors, midwives and parents using it in their local areas, this would prove to the government that healthcare professionals and families wanted the section included in the core pages.

“What this new body map does is allow birthmarks to be flagged and initiate a referral to a paediatrician for further consideration”

Carly Jim

Dr Carly Jim, senior lecturer in psychology at Manchester Metropolitan University, who helped to design the new body map and is a trustee of the Childhood Tumour Trust, said: “The charity has been campaigning for the last few years to get a body map into the red books nationally.

“We have been lobbying the government and reached a brick wall,” she said. “They are essentially saying we need to prove it works before they consider it for national inclusion.

“It’s baffling that something so simple that can save lives isn’t included in the red book as standard,” she added.

“The average person, including myself before the diagnosis of my daughter with neurofibromatosis, doesn’t know that if a child has six or more birthmarks, quite probably - up to 95% probability actually - they have neurofibromatosis, which is a genetic condition,” said Dr Jim.

“People like midwives may notice birthmarks and may notice a large number of birthmarks but observations such as these are not otherwise recorded,” she said. “What this new body map does is allow birthmarks to be flagged and initiate a referral to a paediatrician for further consideration.”

Body map llustration to identify birthmarks and a genetic condition.

Body map in red book

Source: Manchester Metropolitan University

Dr Jim’s new body diagram illustration appears in East Sussex’s version of the Personal Child Health Record

 

 

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