Neurofibromatosis: Children

Department of Health and Social Care written question – answered on 5th June 2019.

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Photo of Paul Williams Paul Williams Labour, Stockton South

To ask the Secretary of State for Health and Social Care, what plans he has to add a body map insert page to the Personal Child Health Record to improve recognition of neurofibromatosis.

Photo of Seema Kennedy Seema Kennedy The Parliamentary Under-Secretary for Health and Social Care

The content of the Personal Child Health Record (PCHR) is overseen by a multi-disciplinary group hosted by the Royal College of Paediatrics and Child Health (RCPCH). The inclusion of a body map in the paper-based version of the PCHR to help improve recognition of conditions such as neurofibromatosis has previously been discussed.

Whilst it is recognised that some areas choose to include a body map in the paper-based version of the PCHR they issue to new parents/carers at a child’s birth, the RCPCH hosted committee rejected a request for it to be included universally. The matter has subsequently been referred to the UK National Screening Committee for further consideration.

An electronic version of the PCHR is being piloted and will be further developed. Access to information on neurofibromatosis and other conditions which can be accessed by parents, carers or health professionals will be considered as part of this process.

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