SLIDE 1
Why is the LeDeR programme so important?
- Reviewing deaths of people
with Learning Disabilities
- Identifying:
best practice service improvements
- Reducing health
Session 1: Introduction. Emily Handley 1 Why is the LeDeR programme - - PowerPoint PPT Presentation
Session 1: Introduction. Emily Handley 1 Why is the LeDeR programme - - PowerPoint PPT Presentation
Session 1: Introduction. Emily Handley 1 Why is the LeDeR programme so important? Reviewing deaths of people with Learning Disabilities Identifying: best practice service improvements Reducing health inequalities &
SLIDE 2
SLIDE 3
What do we know about deaths of people with Learning Disabilities?
Death by Indifference (2007)
- Worse healthcare in the NHS
than the general population due to “institutional discrimination”
CIPOLD (2013)
- Dying 20 years younger than
general population
- 3 x as likely to die from a cause of
death that could be prevented by good quality care
3
SLIDE 4
Connor Sparrowhawk & The Mazars Report
4
- Connor’s family
campaigned tirelessly for thorough investigations into Connor’s death
- The Mazars report found
<1% of deaths of people with LD were investigated
- The CQC found no single
NHS trust that was doing a good job of reviewing mortality
SLIDE 5
CQC Report: Learning, Candour & Accountability
- Families told the CQC they
had a poor experience of investigations & were not consistently treated with respect, sensitivity & honesty
- Many trusts said they value
family involvement
- NHS staff don’t feel
confident enough to involve families in investigations
5
SLIDE 6
What families want from reviews & investigations
- To know how and why their
relative died
- Clarity, truth, accountability
- To know there will be
change
6
Julian, 2016
SLIDE 7
Family Perspectives
“It would mean that her suffering and her death had achieved something of lasting value” (Karen, sister of Robin)
7
“The irony is we never wanted to lodge a formal complaint... We didn't want it to be about blame, we wanted it to result in good learning” (Scott, father of Sam) “I didn’t want to be placated with answers that were formed in such a way that they caused less hurt” (Melissa, Mum of William) Julian, 2016
SLIDE 8
What helps families?
- Compassion and humanity
- Honesty and detail
- Support and family liaison
- Involving families in
investigations
- Ethical practice
- A focus on change and
improving practice
8
Julian, 2016
SLIDE 9
Family Perspectives
“They did not rush us. They went at our pace…They were human. They cared and their compassion will never be forgotten” (Melissa, Mum of William) ‘She came to see us, the kindest thing anyone ever did for us. She was exceptional…and went through the post mortem’
Julian, 2016
SLIDE 10
The role of Bereavement
People react in different ways to loss (e.g. sadness, anxiety, anger, guilt, denial) If grief symptoms do not fade or get worse, we may experience “complicated grief” Traumatic circumstances can increase the risk of complicated grief (e.g. unexpected deaths)
SLIDE 11
Engaging bereaved families in LeDeR
- It is important for families to
understand how somebody died
- Efforts to “protect” families can
actually worsen their grief (e.g. complicated grief or secondary trauma)
- Families play a critical role in helping
us learn from deaths
- Although families may be upset, this
is a normal part of grief
- We must engage with each individual
and be guided by them
SLIDE 12
Working together to supporting reviewers
- This work may have an emotional
impact on reviewers & LACs, as bereavement is universal.
- Family engagement in mortality
reviews is a new direction of travel for health/social care
- Reviewers need support to develop
the skills, confidence & resilience to undertake this work.
- Engaging families well will support
the development of a learning culture & improve services.
SLIDE 13