Transcript Slide 1

Today
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Reports
LD- Diagnosis
LD Prevalence
Health needs
Carers
Reports
• Health
Hospital Care
Health For All- poor health care for LD population
MH- Post Cornwell and Merton- HCC, SHA
Community Care
Equal Treatment: Disability Rights Commission
Scottish Assembly
• Social care
• Valuing People
• Valuing People Now
• Specific groups
• Autism
• Prison Population
LD def
1 A significant reduced ability to understand new or complex information and to learn new skills (
impaired intelligence)
2 A reduced ability to cope independently ( impaired social functioning)
3 Needs that started before adulthood, with a lasting effect on intelligence
Note
Reduced ability not inability
Age cut off- 18
No mention of IQ
ICD-10
• Axis I Severity of LD and problem behaviour
• Axis II Associated medical condition (epilepsy,
Down’s)
• Axis III Associated psychiatric disorder including
PDD-autism)
• Axis IV Global assessment of psychosocial
disability
• Axis V Associated abnormal psychosocial
situation ( institutional upbringing)
DC-LD
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Mild LD
IQ range=50-69; mental age = 9 to under 12
years
Moderate
IQ range=35-49; mental age = 6 to under 9
years
Severe
IQ range=20-34; mental age = 3 to under 6
years
Profound
IQ range <20; mental age= <3 years
Axes in DC-LD
• Axis I severity of LD
• Axis II Cause (s) of LD
• Axis III Psychiatric Disorder
Level A DD- includes ASC
Level B Psychiatric illness
Level C PD
Level D Problem Behaviour
Level E other disorders
Prevalence of LD; Eric Emmerson and Chris
Hatton of the University of Lancaster-2004
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985,000 people in England have a learning disability (2% of the general
population).
This figure includes 828,000 adults (aged 18 or more).
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Of these adults,
177,000 were known users of Health and Social Care learning disability
services in England (equivalent to 0.47% of the adult population).
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In the East of England, 113,220 people with a learning disability
with 20,854 people known to Health and Social Care specialist learning
disability services
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2,000 patients registered with a General Practitioner (GP)
40 people LD-85% mild to moderate LD
9 would be known to specialist learning disability services.
Future anticipated trends in
Learning Disabilities
• Increase Prev of LD over the next two decades
15 % growth from 2001 to 2011
20% from 2001 to 2021.
• Disproportionate increase in demands on service
provision, primarily for those from the age range of fifty
and above.
• An example of this would be anticipated increase in
demand for specialist services by 28% between 20012011 and 48% over two decades between 2001- 2021.
(A life like no other, HCC).
Possible reasons for increased
prevalence
• Women deciding to start families at a later
age
• Better survival at birth
• Decreasing mortality
• Increased alcohol consumption
• Teenage pregnancies.
Environment Factors resulting in
increase in Learning disability
population
• 1) Increased life expectancy due to improved maternal and neonatal
care
• 2) Better survival of those children with complex health needs
• 3) Increase use of alcohol during pregnancy especially in cases of
unplanned teenage pregnancy may contribute to increase in
prevalence of foetal alcohol syndrome.
• 4) Improved health care of adults with complex health needs
• Other factors that might have an impact in future are
• Changing trends in the age of conception
• English adults from South Asian minority ethnic communities where
the prevalence of Learning disabilities is higher
• Better diagnosis of Autism spectrum and other developmental
disorder
Changing trends
• Many adults with learning disabilities
leaving NHS care have mental health
problems or challenging behaviours
• Older population have complex N
• needs requiring additional support
from both health and social care
Story of X and Y
Basic epidemiology
• Majority Genetic causes-60%
Down’s syn-1/3 of all causes of severe
impairment at birth
Single gene disorder 12%
X- linked chromosome disorder( including
fragile X)-10%
• Environmental 40%
maternal infection, diet, substance misuse,
prematurity, damage after, childhood infections,
toxic agents, accidental injury
• 1/3 no cause identified
Social Class and LD
• Mild LD- no identifiable cause- more likely
that parents belong to SC-4-5
• Mild LD- if in SC1-2 more likely to have an
identifiable cause
• Severe LD- evenly distributed among SC
at birth
Environmental causes of LD
D a m a g e a fter b irth
M a tern a l in fectio n s
E a r ly c h ild h o o d
in fe c tio n s
G e r m a n m e a sle s
C y to m e g a lo v ir u s
A c c id e n ta l a n d n o n a c c id e n ta l in ju r ie s
C o n g e n ita l sy p h ilis
T o x ic a g e n ts
E n v iro n m en ta l risk s
S e v e r e c o n v u lsio n s
In a d e q u a te p r o te in in
d ie t
D iet o r su b sta n ce a b u se
E x tre m e p re m a tu rity
P o o r d ie t
F o e ta l a lc o h o l sy n d r o m e
T he m e nta l he a lth fo u n d a tio n - T he
fu n d a m e nta l fa c ts
D a m a g e d u rin g
d eliv ery
O b ste tr ic
c o m p lic a tio n s & b ir th
in ju r ie s
Sensory and Physical Disability
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30% have a significant sight impairment
40% have significant hearing problems
30% have physical disabilities
13–24% have epilepsy
Complex disability
Long term hospital population
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Decline in number of long stay
beds
1950’s Royal Commission on
mental illness and deficiency
1971 the White paper, Better
services for mentally handicapped
1980’s reports by Audit
commission
Griffiths Report, Community Care:
An agenda for Action
1989 White Paper Caring for
people
1990 Community Care Act
2000- Valuing People
Now- over 90% in the community
60,000
50,000
40,000
30,000
20,000
10,000
0
1971
1991
2009
Prevalence of Psychiatric Disorder and CB
Study
Type of study
Number
Key findings
Rutter, Tizard &
Whitmore
1970
Population based; Isle of Wight
3,271
30-42% of 9 to 11 year-olds vs 6-7% of
controls
Deb, Thomas &
Bright, 2001
Random selection community sample
Disability Assessment Schedule)
Ages 16-64
101
60.4% one behaviour
23% aggression
24% self- injury
26% Temper tantrum
26% overactivity
29% screaming
38% Attention seeking
20% objectionable habits
18% night time disturbance
12% destructiveness
Cooper et al,
2007
Population-based. Case ascertainment
through various means
1023
Point prevalence of mental ill-health 40%
35.2%-DC-LD
16.6% -ICD-10-DCR
15.7% DSM-IV-TR
Schizophrenia 3%
Bipolar Affective disorder 1.5%
Depression 4%
GAD 6%
Specific phobia 6%
Agoraphobia 1.5%
Obsessive-compulsive 2.5%
Dementia at age 65 year and over 20%
Autism 7%
Study
Type of study
Number
Key findings
Rutter, Tizard &
Whitmore
1970
Population based; Isle of Wight
3,271
30-42% of 9 to 11
year-olds vs 6-7%
of controls
Deb, Thomas &
Bright, 2001
Random selection community sample
Disability Assessment Schedule)
Ages 16-64
101
60.4% one behaviour
23% aggression
24% self- injury
26% Temper tantrum
26% overactivity
29% screaming
38% Attention seeking
20% objectionable habits
18% night time disturbance
12% destructiveness
Cooper et al,
2007
Population-based. Case ascertainment
through various means
1023
Point prevalence of mental ill-health 40%
35.2%-DC-LD
16.6% -ICD-10-DCR
15.7% DSM-IV-TR
Schizophrenia 3%
Bipolar Affective disorder 1.5%
Depression 4%
GAD 6%
Specific phobia 6%
Agoraphobia 1.5%
Obsessive-compulsive 2.5%
Dementia at age 65 year and over 20%
Autism 7%
Prevalence of Psychiatric disorders
Study
Type of study
Number
Key findings
Rutter, Tizard &
Whitmore
1970
Population based; Isle of Wight
3,271
30-42% of 9 to 11 year-olds vs 6-7% of
controls
Deb, Thomas &
Bright, 2001
Random selection community sample
Disability Assessment Schedule)
Ages 16-64
101
60.4% one behaviour
23% aggression
24% self- injury
26% Temper tantrum
26% overactivity
29% screaming
38% Attention seeking
20% objectionable habits
18% night time disturbance
12% destructiveness
Cooper et al,
2007
Population-based. Case ascertainment
through various means
1023
Point prevalence of mental ill-health 40%
35.2%-DC-LD
16.6% -ICD-10-DCR
15.7% DSM-IV-TR
Schizophrenia 3%
Bipolar Affective disorder 1.5%
Depression 4%
GAD 6%
Specific phobia 6%
Agoraphobia 1.5%
Obsessive-compulsive 2.5%
Dementia at age 65 year and over 20%
Autism 7%
Study
Type of study
Number
Key findings
Rutter, Tizard &
Whitmore
1970
Population based; Isle of Wight
3,271
30-42% of 9 to 11 year-olds vs 6-7% of
controls
Deb, Thomas &
Bright, 2001
Random selection community sample
Disability Assessment Schedule)
Ages 16-64
101
60.4% one behaviour
23% aggression
24% self- injury
26% Temper tantrum
26% over activity
29% screaming
Cooper et al,
2007
Population-based. Case ascertainment
through various means
1023
Point prevalence of
mental ill-health 40%
35.2%-DC-LD
Schizophrenia 3%
Bipolar Affective disorder 1.5%
Depression 4%
GAD 6%
Specific phobia 6%
Agoraphobia 1.5%
Obsessive-compulsive 2.5%
Dementia at age 65year
and over 20%
Autism 7%
Mental Health Needs and their
relationship to care needs
Admissions/Enhanced CPA
problems(1%)
Severe MH problem
Mhild
9-10%
Moderate MH
Continuous work
Admissions
Enhanced CPA
Complex Problems
Mhi LD
Primary care
15%
Mild MH needs 5%
Primary care
Minor MH needs 70%
Standard CPA
Assessment and
intervention
Primary care
Social
Developmental
services
Mean age of death for people with learning
disabilities living in different institutions
during different period of time. Puri et al 1995
Years
Men
(in years)
Women
(in years)
1931-35
14.9
22
1951-55
29.2
36.3
1976-1980
58.3
59.8
Health Needs
Health Needs
Obesity.
The rate of obesity ;
LD Body Mass Index (BMI) was 28.3% compared to 20.4%
for the remaining population
Associations of Risk
Increased risk due to mobility problems, lack of exercise,
side effect of medication, lack of health education.
Associated with obesity, and is a risk factor for people
with Downs syndrome, Fragile X and other genetic
syndromes.
Cardio Vascular (Heart disease).
Respiratory diseases
Higher rates of respiratory disease (19.8%) than the general
population (15.5%).
Causes 50% of deaths of people with a LD
Neurological Difficulties particularly epilepsy. mild or
moderate LD
higher rates of epilepsy (5%) than the general population
(0.5%).
Severe LD
risk of developing epilepsy is 30%
Profound LD
50%.
Musculoskeletal
Asthma and respiratory disease are a particular risk for
people with severe learning disabilities, particularly
where they are immobile or underweight. There is an
increased risk for genetic syndromes.
60% (60 in 100) of child and 40% (40-100) of adults
deaths related to epilepsy may be avoidable.
Osteoporosis is a particular problem where people are
largely or completely immobile and this can be a
particular difficulty for people with learning disability
and epilepsy.
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Health needs
Cancers
Cancer rates in LD are higher or more severelow screening rates .
Some cancers do seem to occur in higher rates.
Incidence of Gastro intestinal cancer is 48%
vs 25% in general population.
Thyroid disorders
Nutrition and Diet
Less than 10% (10 in 100) of adults with learning
disability eat a balanced diet with sufficient
intake of fruits and vegetables
Oral Hygiene
Accidental Injury
The low uptake of breast and cervical cancer
screening makes it difficult to obtain a
meaningful picture of incidence.
Downs syndrome and some association with
anti-epileptic mediation and genetic
syndromes.
More associated with residential settings,
feeding difficulties.
High rates of gum disease, calculus and caries
than the general population Up to 25% have
unmet dental needs.
mental illness, epilepsy, challenging behaviour.
Other risk factors are sensory and
movement deficits and reduced ability to
cope with environmental factors.
Leading causes of death
• Poor gen health- weight
• Poor uptake for screening
• Poor recognition of common association
Contributing factors
Communication
Lack of training
Carers
• 60% of adults with LD living with their family and
one third are living with carers over the age of
70 years (MENCAP, 2000).
• Up to 25% of people with LD come in contact
with services later in life with death or ill health of
the carer being the main reason for referral
• There are also young carers who are caring for
their parents or siblings with learning disability
Caring for People with a
Learning Disability
Epilepsy
• monitor epilepsy
• provide emergency treatment
• understand the complications of epilepsy
• provide safe environment
• manage various behaviours exhibited by the patient before, during
and after the seizure.
Autism
• understand the developmental condition
• manage associated behaviours
• interpret and manage behaviour
Downs Syndrome
• onset and progression of dementia earlier than expected.
Other areas that carers feel need
addressing
• Life Long Care
• Transition
Summary of recommendations
Access to Mainstream Health and Social Care
E.g. Annual Health checks, targeted health promotion and screening, individual
budgets & Joint Care Packages
Use of Reasonable Adjustments
E.g. Flexible appointment times, Easy read documents, Trained staff
Transitional Support
E.g. Health and Social care Joint up Planning, Use of ‘My Developmental book’
Transitional document to include, health education and social care ???
Educational Support
Effective Care and Support Plan for Individual and Family
E.g. Individual Budget, Respite, Integrated health and social care packages
Accurate Diagnosis
E.g. ADI/DISCO, Genetic Screening
Prevention
E.g. Antenatal Screening