1. Doing it better
Engaging with families after the preventable death of a
loved one

2. This presentation is based on the experiences of
one family after their beautiful son died a
preventable death in an NHS Trust, aged 18. The
details of what happened are subject to
investigation. The basic facts are: LB died in the
bath in a specialist NHS unit where there were four
staff to five patients. And he had epilepsy, learning
disabilities and autism.

3. Core ingredients
• Trust
• Openness and transparency
• Empathy (Always think ‘How
would I feel right now if this had been
my son, daughter, parent, relative...’)
• Listening
• Doing

4. Say sorry
• Say (and mean) how desperately sorry you are
that the person has died. Say that you will do
everything you possibly can to get to the
bottom of what happened and make sure it
never happens again.

5. Information
• Keep the family informed regularly
(check how often they would like
updates)

6. Think of others
• Patients don’t exist in a vacuum. Other patients
may be distressed about what’s happened and may
need support. [NB: learning disabled people feel grief
too].

7. Efficiency and speed
• In these circumstances, a commitment
should be made by the CEO/Board to
make sure all actions around what has
happened should be expedited and no delay
allowed to creep in at any stage.

8. Reputation
• Your reputation means jack shit when something
like this happens. You should be focused on making
sure that you are as open and transparent as
possible with the family.

9. Embrace the challenge..
• ...of sorting out poor practice and old
rubbish

10. Disclose, disclose,
disclose
• If the family request all the relevant
records, disclose them. As soon as possible.
And make sure these records are the full
version and a complete set...

11. ... keep the black to a minimum

12. • Remember if you hold back ‘dodgy’ documents,
the chances are the family will receive them via
an alternative route, such as social services or
the clinical commissioning group.

13. Surveillance
• Just because something is in the public
domain, e.g. on a social media platform,
does not give you the right to surveil it.

14. • Finally, always remember the person who
died.

15. #justiceforLB