Some thoughts and evidence about good family engagement in NHS death investigations - questions for reflection, what families experience, what good looks like and some practical ideas for improvement
2. How do you involve families in
learning from deaths?
• Measurement
• Strengths
• Weaknesses
• Worries/concerns
• Ideas
3. Your current practice
• How do you know how you perform?
• What do you think your trust does well?
• What do you think your trust needs to
improve?
• What most concerns or worries you about
engaging families?
5. CQC Deaths Review
‘Many carers and families do not experience
the NHS as being open and transparent and
that opportunities are missed to learn across
the system from deaths that may have been
prevented. Many of the NHS staff we heard
from shared this view, together with a
commitment for this to change’ p2
6. ‘Those working in health and social care
have a moral responsibility, and a legal duty,
to be open and honest… some families
described incredibly kind and
compassionate care by individual members
of healthcare staff. Yet the same families
also reported being ignored by others and
feeling that their questions were left
unanswered’ p4
7. ‘Across our review, we were unable to
identify any trust that could demonstrate
good practice across all aspects of
identifying, reviewing and investigating
deaths and ensuring that learning is
implemented’ p6
8. Family and carer involvement
• Poor experience of investigations, not
consistently treated with respect and
honesty despite many trusts stating
they value family involvement and
have policies and procedures in
place to support it
9. Family and carer involvement
• Families not routinely told what their rights
were or how to access support/advocacy
• Extent involved varies considerably; not
always kept informed
• Frequently not listened to; some cases
involvement is tokenistic and views of
family/carers not given same weight as
clinical staff
10. Family and carer involvement
• The NHS underestimates the role that
families and carers can play in helping to
fully understand what happened to a
patient. They offer a vital perspective
because they see the whole pathway of
care that their relative experienced.
15. Table feedback
• Initial contact and notification of death
• Involvement in investigation process
• Reporting and learning
• Scrutiny
• Communications
• Service development and training
16. What good looks like for families
• Compassion and humanity
• Honesty and detail
• Support, family liaison and advocacy
• Genuinely equal value placed on family
perspective – actually involving families
• Ethical practice
• Focus on change and removing risk
17. Practical steps
• Acknowledgement
• Saying sorry, being human
• Share information fully
• Listen and answer questions
• Be honest
• Don’t send letters on a Friday
18. Practical steps
• Respect and bin bags
• Counselling and bereavement support
• Advocacy and investigation support
• Harness family experience for
improvement work/supporting Board
• Document successes
• Monitor over time, consider impact