Primary Care for patients
with a Learning Disability
Jan-net Day Conference
12th February 2013
Who am I?
Guy Bradley-Smith
What am I?
Where am I from?
St Thomas Health Centre in Exeter
Why am I here?
Because I got up early
to catch a train ...
To answer an
invitation from
Janet...
and am lucky to have made it..
December 2012
GBS and Learning Disability (LD)
Exeter Primary Care Group
Vice-Chair
1999 - 2001
March 1999
...then Exeter Primary Care Trust lead for LD
GBS and Learning Disability (LD)
A GP with a list of 2000 patients can expect to have 40
PWLD on that list of whom 8 will have a severe LD.
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1/3 will have a physical disability
1/3 will have epilepsy
1/3 will have visual problems
40% will have hearing problems
~50% will have mental health problems
50-90% will have communication problems
Mike Kerr : Crises of Care
PWLD have more health problems with:
• Increased mortality
• Increased morbidity
• Increased negative determinants of health
(financial, housing , employment etc.)
Mike Kerr : Crises of Care
And PWLD have more problems with healthcare
because of:
• Unequal access to health services
• Inequality in provision of health services
Why is their health and healthcare so
poor?
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Low expectations
Not knowing they are unwell
Inability to engage with Primary Care
Literacy/Numeracy problems
Genetic issues (Down’s dementia etc)
Failure to engage with screening programmes
Lack of knowledge in Primary Care staff
Lack of integration with carers
a new challenge .....
Comparing names of
patients/clients .....
Comparing names of GP
patients/ DCC clients .....
Valuing People 2001
The first White Paper on
learning disability for
thirty years set out an
ambitious and
challenging programme
of action for improving
services
March 2001
Cornwall 2006
Meeting with GP
colleagues to discuss
the specific needs of
LD patients and the
role of the GP
Royal Devon & Exeter Hospital 2006
Liz Jennings, Liaison nurse for
Adults with a Learning
Disability, Royal Devon and
Exeter Foundation Trust
PWLD Healthcare 2007
The Death by indifference
campaign began after six people
with a learning disability died in
NHS care. Their families were not
getting answers about why their
loved ones had died, or why they
were treated so badly because
they had a learning disability.
March 2007
Darzi review 2008
Learning Disability
considered separately from
Mental Health by Sir Ian
Carruthers, Chair of the
South-West SHA
..... token GP ........
PWLD Healthcare 2009
This report illustrated some significant and distressing failures in
service across both health and social care, leading to situations in
which people with learning disabilities experienced prolonged
suffering and inappropriate care.
March 2009
PWLD Healthcare 2009
Valuing people now set out the
Government's strategy for
people with learning disabilities
for the following three years
following consultation.
January 2009
GBS LD Healthcare 2009
..many managers, 1 GP, funding issues .......
GBS LD Healthcare 2010
..many managers, 2 GPs, funding issues .......
PWLD Healthcare 2012
74 deaths and counting confirmed that, although some
positive steps have been taken in the NHS, many health
professionals are still failing to provide adequate care to
people with a learning disability. The report highlights the
deaths of 74 people with a learning disability in NHS care
over the last ten years – highlighted in an article in The
Guardian on 3 January – which Mencap believes are a
direct result of institutional discrimination and could
have been avoided.
February 2012
CIPOLD
... Family commitment and
determination, outstanding Primary
healthcare, superb allied health
professionals...
Sam 2012
The Times 21/09/2012
Pre-1980
Pre- 1980, a large proportion of People with a
Learning Disability (PWLD) were cared for
institutions eg. Langdon Hospital.
1980 onwards
The move to getting them out of these into the
community was led by the DH. Devon was one
of the first to achieve the goal of getting these
patients into the community.
What difficulties with this policy
might you have expected?
You have an LD and, today, feel ill…
Draw an algorithm of what happens
from this point, noting where and
what the barriers might be
Person Centred Care
An Inconvenience Store
Reasonable Adjustments….
Attempts to improve PWLD
healthcare…….
• PCMD Student Selected Units
Attempts to improve PWLD Primary
healthcare…….
• RCGP Curriculum
Statement 14
Attempts to improve PWLD
healthcare…….
• Primary Care Learning Disability Liaison nurses
Julie Wilkins
Attempts to improve PWLD
healthcare…….
• RD&E Liaison nurse
Liz Jennings
From 1 WTE to 3 WTE!!
Attempts to improve PWLD
healthcare…….
• Annual Health Check DES and LES
GP Annual Health Checks for PWLD
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Currently in their 3rd year
LD patients need to be identified
Cross correlation with DCC registers
Invitation to attend sent out
Protocol set by practice
Report required at the end of the year
£50 aspiration payment followed by £50 at end
of year per patient for completed health checks
GP Annual Health Checks for PWLD
Reduced Cardiff Health Check:
Nurse 10 mins
• Height, Weight, BMI
• BP
• Ears
• Urinalysis
• Smoking, Alcohol
• Immunisations
• Date last saw Optician, GDP
GP 20 mins
• Other CDM reviews
• Meds review especially Epilepsy
• Screening to date
• Contraception
• Systems review
• Systems exam as indicated
•Syndrome specific
• Secondary Care issues?
GP Annual Health Checks for PWLD
Issues can that practices need to consider:
• Cross-correlation of NHS/DCC lists
• Mild/Moderate/Severe LD?
• Invitations
• Staff Roles
Cost/Benefit ...
Mencap GIR-FTS
• 3 year project
• 4 CCGs
• 20 Practices in each area
• Empowering PWLD
• Reasonable Adjustments
MENCAP GIR
• Similar projects in Tyneside, Surrey and Northampton
• 2 main approaches:
– Advice service: Surgeries viewed through the eyes of
LD Champions and mentors to offer suggestions
about ‘reasonable adjustments’
– Training workshops to all Primary healthcare staff
• National implications ………
GIR - Benefits for Practices and
CCGs
• Free support to practices and
CCGs to fulfil Equality (2010),
Mental Capacity (2005) and
Human Rights (1998) legislation
• All Means All – get it right for LD
and you get it right for many other
disadvantaged patients
• Meet LD Health Self-Assessment
targets (NHS operating framework)
• Evidence and examples of good
practice to CQC
• Improve info for the NHS
Commissioning Board
Person Centred Care
Legislation:
• Human Rights Act (1998)
• Mental Capacity Act (2005)
• Equality Act (2010)
• Safeguarding processes
Points to consider
• Institutional care
Institutional care
• .. has gone
Institutional care
• or has it..........
...raised awareness, CCG governance, CQC ........
Points to consider
• Institutional care
• The G in GP
The G in GP
• Stands for General
The G in GP
• Stands for General
The G in GP
• Stands for General
Points to consider
• Institutional care
• The G in GP
• The future of Annual Health Checks (AHCs)
AHCs most obvious benefits?
• Primary Care staff learning
• Relationship building both with PWLD and
their Carers
AHCs biggest challenge ....
• 52% LD patients had a BMI >30
• 35% LD patients had a BMI >35
Dieticians.......
...Opticians, Audiologists, Pharmacists, Dentists ......
GP Annual Health Checks for PWLD
The numbers are on
the decline ....
and the pick-up rate is
also falling...
Points to consider
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Institutional care
The G in GP
The future of Annual Health Checks (AHCs)
The shared general needs of patients both with
and without a Learning Disability
Shared needs
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wanting a female GP
not wanting to move doctors
earlier and later appointments
more time
‘expert’ knowledge
Points to consider
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Institutional care
The G in GP
The future of Annual Health Checks (AHCs)
The shared general needs of patients both with
and without a Learning Disability
• All Means All
All Means All
• All NHS and Social care
• All Care pathways
• All patients groups will benefit from an
inclusive approach
All Means All
Points to consider
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Institutional care
The G in GP
The future of Annual Health Checks (AHCs)
The shared general needs of patients both with
and without a Learning Disability
• All Means All
• Hearts and Minds
Hearts and Minds
‘Hearts and Minds: Affecting
positive change in
the workplace’
Lynda Gratton, Professor of
Management at the London
Business School
Thank you