Health Care for people with
learning disabilities
The drive for improvements.
Carol Robinson
What I will cover
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The recent drive for improvements- where
have they come from?
What are the key issues- some figures, some
important factors and the response
The Improving Health and Lives programme
The Confidential Inquiry into premature deaths
of people with learning disabilities
Initial warning from DRC in 2006
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The study, which examined eight million
primary care records, included four area
based in- depth studies and extensive
consultation exercises, showed that
people with learning disabilities are much
more likely than other citizens to have
significant health risks and major health
problems.
The Drivers for Change
Led to ‘Six Lives’ investigation
Recommended that health
bodies confront whether
can meet needs of people
with learning disabilities in
line with current anti
discrimination law &
guidance.
Says that people with
learning disabilities and
their families essential to
delivery of personalised
services & equal outcomes
Sir Jonathan Michael’s Inquiry
The Independent Inquiry into Access
to Healthcare for People with
Learning Disabilities reported in July
2008.The Inquiry found evidence of a
significant level of avoidable suffering
due to untreated ill-health, and the
likelihood that avoidable deaths are
occurring.
What do we know about the health of
people with learning disabilities ?
People with learning disabilities have
shorter lives- the (all cause) mortality
rate is 3 x higher than in the general
population
 One in 7 people with L D rate their
health as ‘not good’ and carers of children
say similar about their sons and daughters
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Increased mental health problems
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Increased prevalence amongst adults
problems especially amongst those on the
autistic spectrum (20-33% of those
known)
◦ 36% of children with learning disabilities have
psychiatric disorders
◦ Suggested by some studies 3x higher
incidence of schizophrenia
More physical health problems
Among people with learning disabilities:
 the leading cause of death is respiratory disease
(46%-52%), with rates much higher than for the
general population (15%-17%)
 Coronary heart disease accounts for 14-20% of
deaths
 They are less likely to have solid tumours but
some groups such as people with Down’s
syndrome are more susceptible to leukaemia.
Helicobacter pylori is linked to stomach cancers
and is much more common amongst people who
have lived in institutions
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The determinants of health
inequalities-- a summary
inequalities
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Social inequalities- poverty, poor housing,
unemployment
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Specific conditions giving rise to increased health
problems
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Reduced health literacy and communication issues
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Personal health risks such as poor diet and lack of
exercise
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Unequal treatment affecting both quality of life
and life expectancy
Some Government Initiatives to
help tackle the inequalities
Valuing People – health action plan & tool
kit
 Quality Outcomes Framework- People
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should be identifiable from GP records
Health checks (directed enhanced
service) 2009
 CQUIN (Darzi 2008) (commissioning for quality
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& innovation)
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PSA 16 (2008)- employment & settled
accommodation
Improving Health and Lives
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Response to the Michael’s Inquiry set up in
2010
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A partnership:
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Three-year project funded by Department of
Health.
Aims to:
Provide better, easier to understand, information
on the health and wellbeing of people with
learning disabilities.
 Gather information from across England to help
hospitals and other providers of health and social
care, to understand better the needs of people
with learning disabilities, and their families and
carers.
 Identify quality improvements that will ensure the
best possible health outcomes
 Working with 6 partner areas and 3 new
commissioning groups
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Some types of output
Review of information on inequalities
 Information about annual health checks
 Guidance for commissioners about
reasonable adjustments, health checks, etc
 Self assessment tools
 Easy read information
www.improvinghealthandlives.org.uk
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CIPOLD
NFRC at University of Bristol- covering
council areas
 Looking at all deaths of people with
learning disabilities
 Process is to determine:
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Whether death was premature
Whether death was expected
Whether there were modifiable factors
Good practice and recommendations for
future
How does it work
Based on model for inquiry into child deaths
 Team of trained investigators gather information
and compile a timeline and a form C.This
provides a summary and explains the sources of
information and then gives cause of death as
understood, lists of relevant factors and Local
Review panel’s view on the death.
 Overview panel decides if the assessment of local
review panel is reasonable.
 Control cases to check not a more generalised
issue
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Some issues emerging:
Mental Capacity Act 2005 – widespread
poor understanding
 A mix of good and poor practice even for
the same individual and in the same
hospital
 Not all are premature deaths
 PM not done even when cause of death
uncertain
 Potential for improving practice is
enormous but may be difficult.
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Some reference materials
Health Inequalities and People with Learning Disabilities in
the UK: 2011 Implications and actions for commissioners
and providers of social care. Evidence into practice
report no. 4 by Sue Turner, November 2011
 Improving the Health and Wellbeing of People with
learning disabilities: an evidence based commissioning
guide for emerging Clinical Commissioning Groups. Draft
document by Matt Hoghton and Royal College of
General Practitioners
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http://www.improvinghealthandlives.org.uk/
publications/