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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 Tearful, withdrawn.
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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 • Tearful, withdrawn.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 • Wheelchair • L sided weakness. Somnolent. • Depressed affect • Few words “terrible” • Nil psychotic • Cognition – • unable to remember carers • Place ok • Insight
New Referral • Consider / rule out physical pathology • Endocrine • Infection • Carcinoma • Rarities !! • Baseline • ECG • FBC, U & E (eGFR), LFT, RBS, TFT’s, lipid profile, prolactin level
General health needs… • Popn with increased health needs • Communication problems • Reduced ability to identify & communicate • Increased longevity > increased conditions eg carcinomas dementia
Healthcare for All 2008 • Hollins et al 1998 • 58 x more likely to die before 50 • 1/3 LD associated morbidities puts at risk • Postural deformities • Chest infections • Dysphagia • Gastro-oesophageal reflux • Constipation / incontinence • Osteoporosis
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 • Epilepsy • 1/3 Epilepsy (20x > general population) • Harder to treat • SUDEP • NICE 2002 • 60% child deaths avoidable • 40% adults avoidable
Healthcare for All continued • Obesity • exercise • Sensory impairments
Healthcare for All continued • PEARL study 2002 • 181 people • ½ new health need identified • BM • Hypertension • Hypercholestrolaemia • Thyroid disorder • Dental • Cardiac\asthma mental health
Healthcare for All continued • Higher 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 overshadowing • Challenging Behaviour
Carers • Ignored concerns – “Six lives” • Excluded from consultation • Expected to manage to much • Carers Act 1995 - assessment of need
Weight • Two ended cluster • Obesity • Additional morbidities • Medication • Physical disability • Dependence on others for healthy lifestyle • Food treat • Less knowledge re healthy
Weight • Office National Statistics 2001 • 19% males & 21 % females – obese • 19.1 males with LD & 34.6% females with LD • Females > males • Community > institutions • Mild Moderate LD> more severe • Importance carer cooperation
Weight • Associated conditions • Down’s • Prader – Willi • Carpenter • Lawrence – Moon –Biedl • Cohen
Underweight • Malnutrition • Feeding difficulties • Fed by others • Soft food • Regurgitation • Immobility • More severe LD • Choreo – athetoid movements • Pressure areas **
Sensory Impairment • Higher rates • Detection – carers • Professional testing • Routine screening • Hearing • Middle ear infections • Wax 7x
Hearing • Middle ear infections • Wax 7x • Associated conditions • Down’s • Fragile X • Noonen
Vision • 1990 Aitchison • > ½ adults in institution had eye problem • Undetected • Severe / profound more likely visual impairment • Associations • Down’s • Prader – Willi • Noonan
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 • Associated • Angelmans • Fragile X
Incontinence • Cooper (1998) • 17.4% - 20-64 • 49.3% >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 • Associated • Downs • Noonan – pulmonary stenosis, ASD, hypertrophic cardiomyopathy • Prader –Willi syndrome – rhabdomyomata of heart & arrhythmias • Fragile 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 • “reasonable adjustment” health inequalities • Reports • Closing the Gap 2006 • Death by indifference 2007 • Independent inquiry into healthcare for people with learning disabilities “Healthcare for all” 2008 • “six lives” 2009
Annual Health Checks • Minimum standard • Des 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 • Training • Understanding of LD • Identification of people with LD & coding • Understanding range & increased health needs • Health check • Information needed before health check • Understanding health action plans • Understanding & awareness of 1:1 health facilitation& strategic health facilitation
Training for health checks • Overcoming barriers • Communication • Physical access • Attitudes • Accessible info & aids • Values & attitudes • Collaborative working • Cares • CLDT • Social 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 • CLDT • 01422 363561 (ask for Julie Chadwick LD team.) • Amanda McKie • Complex Needs Matron • Calderdale & Kirklees • 07827084120
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