Primary Care for patients with a Learning Disability

Primary Care for Primary Care for patients with a patients with a

Learning DisabilityLearning Disability

National Health Facilitation National Health Facilitation NetworkNetwork

2525thth June 2013 June 2013

Who am I?Who am I?

Guy Bradley-Smith

St Thomas Health Centre, Exeter

GBS and Learning GBS and Learning Disability (LD)Disability (LD)

March 1999

Exeter Primary Care GroupVice-Chair

1999 - 2001

...then Exeter Primary Care Trust lead for LD

GBS and Learning GBS and Learning Disability (LD)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.• 1/3 will have a physical disability1/3 will have a physical disability• 1/3 will have epilepsy1/3 will have epilepsy• 1/3 will have visual problems1/3 will have visual problems• 40% will have hearing problems40% will have hearing problems• ~50% will have mental health ~50% will have mental health

problemsproblems• 50-90% will have communication 50-90% will have communication

problemsproblems

Mike Kerr : Crises of Mike Kerr : Crises of CareCare

PWLD have more health problems PWLD have more health problems with:with:

• Increased mortalityIncreased mortality• Increased morbidityIncreased morbidity• Increased negative determinants of Increased negative determinants of

health (financial, housing , health (financial, housing , employment etc.)employment etc.)

Mike Kerr : Crises of Mike Kerr : Crises of CareCare

And PWLD have more problems with And PWLD have more problems with healthcare because of:healthcare because of:

• Unequal access to health servicesUnequal access to health services• Inequality in provision of health Inequality in provision of health

servicesservices

Why is their health and Why is their health and healthcare so poor?healthcare so poor?

• Low expectationsLow expectations• Not knowing they are unwellNot knowing they are unwell• Inability to engage with Primary CareInability to engage with Primary Care• Literacy/Numeracy problemsLiteracy/Numeracy problems• Genetic issues (Down’s dementia etc)Genetic issues (Down’s dementia etc)• Failure to engage with screening Failure to engage with screening

programmesprogrammes• Lack of knowledge in Primary Care staffLack of knowledge in Primary Care staff• Lack of integration with carersLack of integration with carers

a new challenge .....a new challenge .....

Comparing names of Comparing names of patients/clients .....patients/clients .....

Comparing names of GP Comparing names of GP patients/ DCC clients .....patients/ DCC clients .....

Valuing People 2001Valuing 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 2006Cornwall 2006

Meeting with GP colleagues to discuss the

specific needs of LD patients and

the role of the GP

Royal Devon & Exeter Royal Devon & Exeter Hospital 2006 Hospital 2006

Liz Jennings, Liaison nurse for Adults with a

Learning Disability, Royal Devon and

Exeter Foundation Trust

PWLD Healthcare 2007PWLD 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 2008Darzi review 2008

Learning Disability considered

separately from Mental Health by Sir

Ian Carruthers, Chair of the South-

West SHA

..... token GP ........


This report illustrated some significant and distressing failures in service across both health and social care, leading to situations inwhich people with learning disabilities experienced prolonged suffering and inappropriate care.

March 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 2009GBS LD Healthcare 2009

..many managers, 1 GP, funding issues .......

GBS LD Healthcare 2010GBS LD Healthcare 2010

..many managers, 2 GPs, funding issues .......


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

CIPOLDCIPOLD

.....effects o

f instit

utional

care, diagnostic

overshadowing, capacity and

consent... Family commitment and determination, outstanding Primary healthcare, superb allied health professionals...

... family commitment, superb GP care, amazing allied

health professional support...

Pre-1980Pre-1980

Pre- 1980, a large proportion of Pre- 1980, a large proportion of People with a Learning Disability People with a Learning Disability (PWLD) were cared for institutions (PWLD) were cared for institutions eg. Langdon Hospital. eg. Langdon Hospital.

1980 onwards1980 onwards

The move to getting them out of these into The move to getting them out of these into the community was led by the DH. Devon the community was led by the DH. Devon was one of the first to achieve the goal of was one of the first to achieve the goal of getting these patients into the community.getting these patients into the community.

What difficulties with this policy might you have expected?

You have an LD and, today, You have an LD and, today, feel ill…feel ill…

Person Centred CarePerson Centred Care

Reasonable Adjustments….Reasonable Adjustments….

An Inconvenience Store

Attempts to improve PWLD Attempts to improve PWLD healthcare…….healthcare…….

• PCMD Student Selected UnitsPCMD Student Selected Units

Attempts to improve PWLD Attempts to improve PWLD Primary healthcare…….Primary healthcare…….

• RCGP Curriculum RCGP Curriculum Statement 14Statement 14


• Primary Care Learning Disability Liaison nursesPrimary Care Learning Disability Liaison nurses

Julie Wilkins


• RD&E Liaison nurse RD&E Liaison nurse

Liz Jennings

From 1 WTE to 3 WTE!!


• Annual Health Check DES and LESAnnual Health Check DES and LES

GP Annual Health Checks GP Annual Health Checks for PWLDfor PWLD

• Currently in their 3Currently in their 3rdrd year year• LD patients need to be identifiedLD patients need to be identified• Cross correlation with DCC registersCross correlation with DCC registers• Invitation to attend sent outInvitation to attend sent out• Protocol set by practiceProtocol set by practice• Report required at the end of the yearReport required at the end of the year• £50 aspiration payment followed by £50 aspiration payment followed by

£50 at end of year per patient for £50 at end of year per patient for completed health checkscompleted health checks


Reduced Cardiff Health Check: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?


Issues can that practices need to Issues can that practices need to consider:consider:

• Cross-correlation of NHS/DCC listsCross-correlation of NHS/DCC lists• Mild/Moderate/Severe LD?Mild/Moderate/Severe LD?• InvitationsInvitations• Staff RolesStaff Roles

Cost/Benefit ...

Mencap GIR-FTSMencap GIR-FTS

• 3 year project• 4 CCGs• 20 Practices in each area• Empowering PWLD• Reasonable Adjustments

MENCAP GIRMENCAP GIR

• Similar projects in Tyneside, Surrey and Similar projects in Tyneside, Surrey and NorthamptonNorthampton

• 2 main approaches:2 main approaches:– Advice service: Surgeries viewed Advice service: Surgeries viewed

through the eyes of LD Champions and through the eyes of LD Champions and mentors to offer suggestions about mentors to offer suggestions about ‘reasonable adjustments’‘reasonable adjustments’

– Training workshops to all Primary Training workshops to all Primary healthcare staffhealthcare staff

• National implications ………National implications ………

GIR - Benefits for Practices GIR - Benefits for Practices and CCGsand CCGs

And .........

• DDOC• Public Health• Dentists

Person Centred CarePerson Centred Care

Legislation:Legislation:• Human Rights Act (1998)Human Rights Act (1998)• Mental Capacity Act (2005) Mental Capacity Act (2005) • Equality Act (2010)Equality Act (2010)• Safeguarding processesSafeguarding processes

Points to considerPoints to consider

• Institutional careInstitutional care

Institutional careInstitutional care

• .. has gone.. has gone

Institutional careInstitutional care

• or has it..........or has it..........

...raised awareness, CCG governance, CQC ........


• Institutional careInstitutional care• The G in GPThe G in GP

The G in GPThe G in GP

• Stands for GeneralStands for General






• Institutional careInstitutional care• The G in GPThe G in GP• The future of Annual Health Checks The future of Annual Health Checks

(AHCs)(AHCs)

AHCs most obvious AHCs most obvious benefits?benefits?

• Primary Care staff learningPrimary Care staff learning• Relationship building both with Relationship building both with

PWLD and their CarersPWLD and their Carers

AHCs biggest AHCs biggest challenge ....challenge ....

• 52% LD patients had a BMI >3052% LD patients had a BMI >30• 35% LD patients had a BMI >3535% LD patients had a BMI >35

Dieticians.......

...Opticians, Audiologists, Pharmacists, Dentists ......


The numbers are on the decline ....

and the pick-up rate is also falling...



(AHCs)(AHCs)• The shared general needs of The shared general needs of

patients both patients both withwith and and withoutwithout a a Learning DisabilityLearning Disability

Shared needsShared needs

• wanting a female GPwanting a female GP• not wanting to move doctorsnot wanting to move doctors• earlier and later appointmentsearlier and later appointments• more timemore time• ‘‘expert’ knowledgeexpert’ knowledge



(AHCs)(AHCs)• The shared general needs of The shared general needs of

patients both patients both withwith and and withoutwithout a a Learning DisabilityLearning Disability

• All Means AllAll Means All

All Means AllAll Means All

• All NHS and Social care• All Care pathways• All patients groups will benefit from an inclusive approach

All Means AllAll Means All

...with thanks to jan-net



(AHCs)(AHCs)• The shared general needs of patients The shared general needs of patients

both both withwith and and withoutwithout a Learning a Learning DisabilityDisability

• All Means AllAll Means All• Hearts and MindsHearts and Minds

Hearts and MindsHearts and Minds‘Hearts and Minds: Affecting positive

change in the workplace’

Lynda Gratton, Professor of Management at the London Business School

Thank youThank you

especially to Robert &

Sally ...once they found the Health Centre!!

And to you!

Primary Care for patients with a Learning Disability

Documents

learning disability

learning disabilities

learning disability

health servicesinequality

health professionals

nhs care

inappropriate care

social care