Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, how many and what proportion of Child Death Overview Panels cited consanguinity as the (a) primary and (b) secondary cause of death of children in each of the last 30 years.

The Child Death Review Statutory and Operational Guidance (England) sets out as a statutory requirement that, ‘When a child dies, in any circumstances, it is important for parents and families to understand what has happened and whether there are any lessons to be learned.’ The guidance is available at the following link:

https://assets.publishing.service.gov.uk/media/637f759bd3bf7f154876adbd/child-death-review-statutory-and-operational-guidance-england.pdf

These reviews are conducted by child death overview panels (CDOPs), who have a statutory obligation to notify the National Child Mortality Database (NCMD) within 48 hours of a child’s death using a child death notification form, which is available at the following link:

https://www.gov.uk/government/publications/child-death-reviews-forms-for-reporting-child-deaths

The form includes a question about ‘Further family background’ which asks whether the children’s parents are related to each other. The forms are submitted to NCMD who collate the data to produce reports, including its annual data report. Its latest annual report summarised information about child deaths in England up to 31 March 2024 and the findings of reviews carried out by a CDOP on or before 31 March 2024. The report is available at the following link:

https://www.ncmd.info/publications/child-death-review-data-release-2024/

For the first time, this report included information on the number of reviews where specific contributory or modifiable factors were identified. Contributory factors may have contributed to vulnerability, ill health or death, while modifiable factors may have contributed to the death of the child and might, by means of a locally or nationally achievable intervention, be modified to reduce the risk of future deaths. Of 3,176 reviews taking place in the year ending 31 March 2024 where contributory factors were identified, 128 reviews, or 4%, identified consanguinity as a contributory factor. Of 1,120 reviews taking place in the year ending 31 March 2024 where modifiable factors were identified and data was available, 16 reviews, or 1%, identified consanguinity as a modifiable factor.