Doing it better

Engaging with families after the preventable death of a loved one

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.

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

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.

Information•Keep the family informed

regularly (check how often they would like updates)

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].

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.

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.

Embrace the challenge..

•...of sorting out poor practice and old rubbish

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...

... keep the black to a minimum

•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.

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.

•Finally, always remember the person who died.

#justiceforLB