New body diagram for 'red book'

on 01 March 2018 Red book Neurofibromatosis Birthmarks

The latest versions of the children’s 'red book' health and development log will contain a body map illustration to identify birthmarks and a genetic condition.

New parents and carers in parts of Southern England will be the first to get the new diagram, which was designed by a university academic and charity.

The body map will help to identify the genetic condition neurofibromatosis type 1 as well as differentiating between birthmarks and bruises to avoid cases of erroneously reporting abuse.

The map is not among the core pages of the national standard Personal Child Health Record that goes to every new parent and carer, but is a discretionary page that individual commissioning health bodies can decide to have included.

Manchester Metropolitan University’s senior lecturer in Psychology Dr Carly Jim helped to design the new body map in collaboration with the Childhood Tumour Trust charity, of which she is a trustee.

Carly 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. They are essentially saying we need to prove it works before they consider it for national inclusion.

‘We're trying to show how well it has been responded to and that people using it on the ground – parents, midwives, health visitors – want it in the core pages.’

Carly added that she was ‘incredibly proud’ of the redesigned body map, which alerts the assessor to the potential significance of multiple birth marks and includes a referral process that is key to accurately diagnosing neurofibromatosis and other conditions.

Families in East Sussex will be the first to get the new body map page as an insert in the red books within the next few weeks and the charity hopes other regions can be persuaded to follow suit.

Carly said: ‘It's baffling that something so simple that can save lives isn't included in the red book as standard. 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 – they have neurofibromatosis, which is a genetic condition.

‘People like midwives may notice birthmarks and may notice a large number of birthmarks but observations such as these are not otherwise recorded. This new body map allows birthmarks to be flagged and initiate a referral to a paediatrician for further consideration.’

The body map also raises awareness with health professionals and parents that birthmarks that may be misinterpreted as bruising, especially as the pigment in neurofibromatosis birthmarks takes time to fully show, and therefore helps avoid cases of misidentified child abuse.

‘From an academic standpoint, I helped ensure the redesigned body map is fit for purpose and the charity is out talking to the regions trying to persuade NHS bodies to adopt it in their red books,’ Carly added.