Neurofibromatosis: Children:Written question - 257816

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(Stockton South)
[N]
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Asked on: 23 May 2019
Department of Health and Social Care
Neurofibromatosis: Children
Commons
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.
A
Answered by: Seema Kennedy
Answered on: 05 June 2019

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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