Physical aspects

Aim

New referral

General LD Weight Sensory Epilepsy Dental continence

Special population Down syndrome

Ongoing shared care

Peter

55yr old man with Down’s syndrome

6 month h/o changed personality. Irritability.

Tearful, withdrawn.

Reduced mobility. Falls. Reduced self care.

Forgetting carer’s names

Sister wanted “total body scan”

Weight loss

MSE

What next?.....

?

New Referral

Consider / rule out physical pathologyEndocrine InfectionCarcinomaRarities !!

BaselineECGFBC, U & E (eGFR), LFT, RBS, TFT’s, lipid profile,

prolactin level

General - Health Needs

General health needs…

Popn with increased health needs

Communication problemsReduced ability to identify & communicate

Increased longevity > increased conditions eg carcinomas dementia

Healthcare for All 2008

Hollins et al 199858 x more likely to die before 50

1/3 LD associated morbidities puts at riskPostural deformitiesChest infectionsDysphagiaGastro-oesophageal refluxConstipation / incontinenceOsteoporosis

Healthcare for All continued

Hollins study Early deaths associated with

Cerebral palsy Problems with mobility Residence in hospital

Halstead (2000) Behavioural disturbance & disability better predictors

of low volume poor quality care in primary care

Mir 2004 Ethnicity & disability – adversely affected mortality

Healthcare for All continued

Epilepsy1/3 Epilepsy (20x > general population)Harder to treat SUDEPNICE 2002

60% child deaths avoidable 40% adults avoidable

Healthcare for All continued

Obesity

exercise

Sensory impairments

Healthcare for All continued

PEARL study 2002181 people½ new health need identified

BM Hypertension Hypercholestrolaemia Thyroid disorder Dental Cardiac\asthma mental health

Healthcare for All continuedHigher medical & dental interventions

Lower surgical

Similar admissions but shorter stays

DM less BMI

Stroke less BP

Healthcare for All continued

Less likely pain relief

Less likely palliative care

Healthcare for All continued

Life less valued?

Symptoms misinterpreted Diagnostic overshadowingChallenging Behaviour

Carers

Ignored concerns – “Six lives”

Excluded from consultation

Expected to manage to much

Carers Act 1995 - assessment of need

Weight

Two ended cluster

ObesityAdditional morbiditiesMedicationPhysical disabilityDependence on others for healthy lifestyle

Food treat

Less knowledge re healthy

Weight

Office National Statistics 200119% males & 21 % females – obese19.1 males with LD & 34.6% females with LD

Females > males

Community > institutions

Mild Moderate LD> more severe

Importance carer cooperation

Weight

Associated conditionsDown’sPrader – WilliCarpenterLawrence – Moon –BiedlCohen

Underweight

Malnutrition

Feeding difficultiesFed by othersSoft foodRegurgitation Immobility

More severe LD

Choreo – athetoid movements

Pressure areas **

Sensory Impairment

Higher rates

Detection – carers

Professional testing

Routine screening

HearingMiddle ear infectionsWax 7x

Hearing

Middle ear infections

Wax 7x

Associated conditionsDown’sFragile XNoonen

Vision

1990 Aitchison> ½ adults in institution had eye problem

Undetected

Severe / profound more likely visual impairment

AssociationsDown’sPrader – WilliNoonan

Epilepsy

Common

14 - 44% cf ( 0.5 -%)

Increased younger

Increased severity LD

More complex

More polypharmacy

Increased SUDEP

Dental disease

High levels poor oral hygiene

Studies > less restorative work

Medication > periodontal probs phenytoin > gingivitis

AssociatedAngelmansFragile X

Incontinence

Cooper (1998)17.4% - 20-6449.3% >64

Sensory impairment

Mobility

Infection / indication of morbidity

Related to Behaviour

Respiratory disease

½ all deaths respiratory ( general popn 8%)

Increased in more disabled cf Down’s more able die of respiratory infections

Immobility

Under weight

Heart disease

Reduced

Likely increasing

?impact of atypical AP

High risk obesity

Heart disease

AssociatedDownsNoonan – pulmonary stenosis, ASD, hypertrophic

cardiomyopathyPrader –Willi syndrome – rhabdomyomata of heart &

arrhythmiasFragile X (mitral valve prolapse)

Cancer

Increasing with life expectancy

GI tract more common.

Breast prostate less

Barriers to healthcare

Require more attention Receive same as gen pon

Untreated conditions

Low level heath promotion & screening

Mobility probs

Communication

Cooperation

Liaison with CLDT Health promotion work Support / assist access health

Annual Health Checks

Annual Health Checks

“reasonable adjustment” health inequalities

ReportsClosing the Gap 2006Death by indifference 2007 Independent inquiry into healthcare for people with

learning disabilities “Healthcare for all” 2008 “six lives” 2009

Annual Health Checks

Minimum standardDes specification All with LD known to SS >18

Mod/severe Mild + additional needs

Vital signs annual data collection – who eligible – if received check

Training

Annual Health Checks

TrainingUnderstanding of LD Identification of people with LD & codingUnderstanding range & increased health needsHealth check Information needed before health checkUnderstanding health action plansUnderstanding & awareness of 1:1 health

facilitation& strategic health facilitation

Training for health checks

Overcoming barriersCommunicationPhysical accessAttitudesAccessible info & aidsValues & attitudes

Collaborative workingCaresCLDTSocial care supporters

Experiences & expectations

Consent

Disability Discrimination Act

resources

Health check

Review physical & mental health & referral as needed

Health promotion

Systems enquiry & review of chronic illness

Physical exam

Review of epilepsy

Review of B & mental health

Syndrome specific check

Accuracy of prescribed medn

Review of coordination with secondary care

Review transition arrangements

Contacts

CLDT01422 363561 (ask for Julie Chadwick LD team.)

Amanda McKieComplex Needs MatronCalderdale & Kirklees07827084120

References

Clinical directed enhances services (DESs) for GMS contract 2008/2009

Fraser, W. & Kerr, M. Seminars in the Psychiatry of Learning Disabilities 2nd edition

Butler & Meaney. Genetics of Developmental Disabilities

Healthcare for All (2008)

Six lives