IHRD-37 Response Accepted AI-assessed

Family Involvement in SAI Investigations

Recommendation

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.

Published Evidence Summary
The following publicly available evidence relates to this recommendation:
According to HSC Trusts / Department of Health NI (2026-02-06), family involvement protocols have been established, and a statement of patient and family rights in relation to Serious Adverse Incident (SAI) processes has been developed. HSC Trusts / Department of Health NI (2026-02-06) also stated that an SAI Engagement Platform provides a mechanism for ongoing family engagement. While the government stated in 2018 that a Patient Advocacy Service was being developed, independent evidence from 2026 indicates that a fully funded, independent service as recommended has not been clearly established, although the Patient and Client Council provides advocacy services (HSC Trusts / Department of Health NI, 2026-02-06).
How was this assessed?
Assessed by gemini-2.5-flash on 19 Mar 2026
Checked data held on this site (government responses, progress updates, independent evidence)
External sources searched: www.gov.uk, www.health-ni.gov.uk, www.legislation.gov.uk, hansard.parliament.uk
This recommendation requires implementation across many organisations. The assessment reflects central policy response, not adoption in individual organisations.
Jurisdiction
Northern Ireland
Response
Accepted
Accepted HSC Trusts
01 Mar 2018

Family involvement protocols established. Guidance issued on meaningful engagement with families throughout investigation processes. Patient Advocacy Service being developed.

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Published Evidence

Published assessments of implementation progress from inspectorates, select committees, official progress reports, and other sources. Check the source type badge to see whether each assessment is independent or government self-reported.

Reasonable Progress
06 Feb 2026
HSC Trusts / Department of Health NI Other

Family involvement protocols established with SAI rights statement developed. The SAI Engagement Platform provides a mechanism for ongoing engagement. However, a fully funded independent Patient Advocacy Service as recommended has not been clearly established.

View detailed findings

Recommendation 37 called for extensive family involvement in SAI investigations including a fully funded Patient Advocacy Service independent of individual Trusts. The Patient and Client Council provides advocacy services but whether a dedicated IHRD-specific advocacy service has been established is unclear from public sources. The SAI rights statement and engagement platform represent genuine but partial progress.

IHRD Implementation Programme View Source
Source
Report Report of the Inquiry into Hyponatraemia-related Deaths 31 Jan 2018
Responsible Bodies
HSC Trusts Primary
Recommendation age 8.1 yrs
Last formal update 783 days ago