Recommendation IHRD-37: Family Involvement in SAI Investigations

Trusts should seek to maximise the involvement of families in SAI investigations and in particular: (i) Trusts should publish a statement of patient and family rights in relation to all SAI processes including complaints. (ii) Families should be given the opportunity to become involved in setting the terms of reference for an investigation. (iii) Families should, if they so wish, engage with the investigation and receive feedback on progress. (iv) A fully funded Patient Advocacy Service should be established, independent of individual Trusts, to assist families in the process. It should be allowed funded access to independent expert advice in complex cases. (v) Families in cases of SAI related child death should be entitled to see relevant documentation, including all records, written communication between healthcare professionals and expert reports. (vi) All written Trust communication to parents or family after a SAI related child death should be signed or co-signed by the chief executive. (vii) Families should be afforded the opportunity to respond to the findings of an investigation report and all such responses should be answered in writing. (viii) Family GPs should, with family consent, receive copies of feedback provided. (ix) Families should be formally advised of the lessons learned and the changes effected. (x) Trusts should seek, and where appropriate act upon, feedback from families about adverse clinical incident handling and investigation.