VERINDER
PRASHER, ASHOK ROY
INTRODUCTION
Healthcare
provision for people with learning disabilities has, until recently, received
little attention. During the early part of this century, when an eugenic view
prevailed, children with learning disabilities were often admitted to long stay
institutions and their heath-care needs neglected. With the recent increase in
public awareness of health issues, support from the Government with the
publication of "The Health of the Nation" document, and greater
advocacy, there is now the potential for much needed change. At present, most
causes of learning disabilities (such as chromosome abnormalities or birth
trauma) are not treatable. However, high quality health-care may reduce the
impact of disabilities or handicaps and improve quality of life.
The
closure of large institutions, the advent of care in the community and the
greater role of Primary Care Teams led by General Practitioners has increased
the number of people with learning disabilities living in the community in
supported group homes and with their families. They now live longer as a result
of improvements in healthcare .
This, in turn, has led to an increase in the number of older people with
learning disabilities, who have medical problems related to ageing as well as
problems associated with the cause of their learning problem.
Several
researchers have demonstrated a high prevalence of untreated physical disorders
in people with learning disabilities (Wilson and Haire,1990) and in particular
in the older population (Moss et
al,1993). The commonest forms of pathology include visual impairment, hearing
loss, dental disease, musculo-skeletal problems, endocrine disorders , epilepsy
and obesity (Prasher,1994a). The majority of
people with learning disabilities living
in the community have been reported to have one or more chronic physical and/or
mental disorders ,i.e. sufficient to warrant ongoing medical intervention (Minihan
and Dean,1990).
Common
physical health problems and related issues are discussed in this chapter.
Phenotypic characteristics of syndromes
causing learning disabilities are addressed in Chapter 3 and psychiatric
disorders in Chapter 4.
EXCESS WEIGHT AND
OBESITY
Obesity
is said to be present when there is 'an excessive amount of body fat'. However,
criteria for deciding what is 'excessive' and the accurate measurement of fat
(adipose tissue) remain controversial. Body mass index or BMI (weight in
kilograms, divided by height in metres squared ), is widely used as an indicator of the severity of obesity.
The division by height squared makes allowance for height, and increases the
value of BMI as an indicator of obesity in people of short stature (sometimes a
feature of disorders causing learning disabilities). Body mass index is
conventionally divided into the following bands:-
< 20
underweight
20-24.9
desirable
25-29.9
overweight
30-34.9
obesity
35-39.9
medically significant obesity
40-44.9
super obesity
45+
morbid obesity
For
adults (16-65 years) in the general population, 34% of males and 24% of women
are overweight and 6% of males and 8% of women obese (ie,
with a BMI of 30 or greater). Obesity is most prevalent in middle-age,
has a significant hereditary component and is more common among people from
lower socio-economic groups. Obesity may sometimes result from the development
of an endocrine disorder, or be associated with the use of certain drugs (such
as steroids and oral contraceptives).
Obesity
is common among people with learning disabilities, and may be associated with
particular syndromes such as Down syndrome and Prader-Willi syndrome. Prevalence
rates for being overweight vary from 16%-49% for males and from 21%-63% for
women with learning disabilities. Rates for obesity vary from 16%-20% for males
and 17%-25% for women . For adults with Down syndrome,
31% of males and 22% of women were recently reported to be overweight,
while 48% of males and 47% of women were obese (Prasher,1995).
The
influence of severity of learning disabilities and place of residence on obesity
has been investigated. The highest rates of obesity are found in people living
at home, followed by those living in group homes and the lowest rates being
found among those living in institutions. The reasons for increased obesity in people living at home
are not clear, but may include the accessibility
of food and relative under-activity. The
effect of severity of learning disabilities remains controversial with some
studies showing a low rate of obesity in people with severe learning
disabilities whilst others have
found no association. The cause of obesity is unknown but is probably
multi-factorial, involving calorie intake, decreased resting metabolic rate,
sedentary lifestyle, endocrine abnormalities (such as hypothyroidism), hypotonia
(muscle“floppiness”) and possibly the presence of extra genetic material in
some syndromes. Obesity often starts in childhood and is maintained in later
life.
Obesity
is associated with increased mortality (death rate) and morbidity (rate of
physical disease) and has a detrimental effect on the quality of life of those
affected. Diseases and disorders associated with obesity include coronary heart
disease, gallstones, hypertension, diabetes, gout and arthritis.
The
management of obesity occurring in association with learning disabilities is
therefore of considerable importance. A reduction in weight can only be achieved
by decreasing energy intake, increasing output, or a combination of the two.
Weight reducing diets and exercise have been shown to reduce obesity in the
general population, although motivation and support are often crucial in
determining whether such strategies succeed. Few studies have addressed the
management of obesity in people with learning disabilities (Rotatori and
Fox,1980).Treatments suggested include social reinforcement, self-recording and
multi-component treatment programs. The role of drug treatments (appetite
suppressants or stimulants such as fenfluramine, or hormonal treatments such as
thyroxine) and surgical intervention in people with learning disabilities is
limited. Prevention remains the most important strategy.
HEART DISEASE
Congenital
heart abnormalities are not
uncommon in babies with learning disabilities. Abnormalities are particularly
associated with Down syndrome, Cornelia de Lange syndrome, Cri-du-chat syndrome
and Turner's syndrome. Although heart abnormalities are usually diagnosed in
childhood, individuals may live until adulthood when such pathology may cause
complications. Further, new lesions may develop in adulthood such as the
prolapse of the mitral valve. Table 1 lists some common heart problems seen in
people with learning disabilities.
Table 1
Types of cardiac
disorders
Congenital
Acquired
Aortic
coarctation
Arrhythmias
Hypoplastic
ventricle
Cardiac failure
"Parachute"
mitral valve
Valvular disease
Ventricle
septal defects
Ischaemic heart disease
Patent
ductus arteriosus
Hypertension
Tetralogy
of Fallot
Subaortic
stenosis
Atrial
septal defect
In
adulthood, pulmonary artery hypertension and pulmonary vascular obstructive
disease in association with congestive heart failure are major complications of
childhood cardiac defects. Children
with known heart disease should be followed up closely into adulthood for
evidence of heart failure or pulmonary complications. The accurate diagnosis of
any resulting disease may be difficult and referral to a cardiologist may be
necessary.
The
rise in blood pressure with age which is apparent in the general population has
not been adequately investigated in people with learning disabilities. In people
with Down syndrome , several studies have commented on the presence of a lower
mean blood pressure than for the general population (Richards and Enver,1979).
Such findings suggest that people with Down syndrome are less at risk of
hypertension, myocardial infarction, and cerebrovascular accidents. The risk is
further reduced by the low prevalence of smoking in this population. Further
research into the prevalence of hypertension and its complications in adults
with learning disabilities as a whole is required.
Symptoms
suggestive of heart disease include breathlessness, swelling of the ankles,
cyanotic episodes, feeding difficulties, chest pain, palpitations, fainting and
tiredness. Signs found on physical examination include fast and/or irregular
pulse, abnormal heart sounds, presence of a heart murmur, and high or low blood
pressure. A number of investigations including electrocardiography, chest x-ray,
and echocardiography can aid diagnosis.
Assessment
for cardiovascular morbidity is imperative whenever a person with learning
disabilities shows signs of distress or decline in functioning. For example,
heart failure may first be noticed as a result of its effects, which can include
a loss of skills or behavioural change. The latter may give the impression that
the person has a psychiatric condition.
DISORDERS OF THE
RESPIRATORY TRACT
Structural
abnormalities of the airways involving the nasal passages, oropharynx cavity,
lungs have all been described in people with learning disabilities . There may
be abnormalities of the ribs or rib-cage with increased prevalence of pectus
excavatum (funnel chest
) and pectus carinatum (pigeon chest ) . As with cardiac problems, abnormalities
may be detected in childhood and such abnormalities may persist into adulthood.
Respiratory
tract infections like acute and chronic bronchitis, cause significant morbidity
and mortality in people with learning disabilities despite the use of
antibiotics. This is particularly important after surgery. Pneumonia remains one
of the major causes of death in people with learning disabilities.
Chronic rhinitis (persistant runny nose ) may appear not to be too
serious but can nevertheless cause considerable persistant problems.
Common
symptoms of respiratory disease include cough, purulent sputum, blood stained
sputum, chest pain, breathlessness, wheeze and cyanosis.. On examination,
abnormal breath sounds, discolouration of fingers and chest wall tenderness may
be found. Further investigations including microbiological and cytological
examination of sputum, blood examination, chest-xray, bronchoscopy and lung
biopsy may be required.
Treatment
involves supportive care, maintaining fluid intake, oxygen, antibiotics,
physiotherapy and possibly diuretics and bronchodilators. Presence of congenital
heart disease may lead to pulmonary artery hypertension with subsequent
respiratory failure.
Obstructive
sleep apnoea has been associated with people with learning disabilities and in
particular with Down syndrome. Obstructive sleep apnoea occurs when respiratory
air flow from the upper airways to the lungs is impeded, usually for 10 seconds
or more, resulting in low levels of oxygen in the blood (hypoxemia) or build up
of carbon dioxide in the blood (hypercarbia).
During the interruption of airflow respiration continues but airflow
ceases affecting pharyngeal dilator muscles leading to relaxation and subsequent
airway collapse. The cause is probably multifactorial involving the anatomical
physiological and neurological aspects. Other ongoing respiratory abnormalities
may worsen this condition. The symptoms of obstructive sleep apnoea include:
snoring
interrupted
breathing with sleep
restless
sleep
difficulty
awakening
chronic
nocturnal cough
daytime somnolence
mouth
breathing
failure to thrive
morning
headaches
behavioural changes
school
problems
developmental delay
The
diagnosis of obstructive sleep apnoea depends on the presence of the above
The
presence of significant respiratory pathology may present as a decline in
functioning and may also be mis-diagnosed as a psychiatric disorder.
THE GASTROINTESTINAL
DISORDERS
Abnormalities
of the gastrointestinal tract are a
common occurrence in people with learning disabilities. Common congenital
abnormalities include pyloric stenosis, duodenal stenosis or atresia,
imperforate anus, Hirschsprung's disease and malrotation.
As
with other conditions , these are usually commoner in infants and children
than adults. Gastroesophageal reflux may be present in adults and
subsequently lead to oesophageal strictures requiring surgical intervention.
Other conditions may continue into adulthood leading to complications as with
chronic constipation in Hirschsprung's disease.
With interventions from paediatricians, dieticians, surgeons
and other professionals, many of the problems may be managed as would be
in the general population.
Symptoms
of alimentary disease include discolouration of the skin,pain, loss of appetite,
vomiting, heartburn, difficulty in swallowing,
constipation, diarrhoea, loss of weight and bleeding.
Investigations include blood tests, examination of
stools, plain abdominal xray examination, barium studies, endoscopy and
ultrasound studies.
Constipation
may lead to disruptive behaviour and irritability. Loss of weight and appetite
due to gastrointestinal pathology may be mis-diagnosed as symptoms of
depression. A screen for the possibility of abdominal pathology must therefore
be made in all adults "who shows signs of being unwell”.
URINARY TRACT DISORDERS
Congenital
abnormalities of the urinary system include hydronephrosis, obstructive uropathy,
renal agenesis etc. Such abnormalities may persist into adulthood where
secondary complications may arise , e.g. urinary-tract infections, renal failure
and hypertension. Symptoms of a urinary tract infection include, increased
frequency of urination , pain while passing urine and
discolouration of urine. Investigations
for possible kidney disease include examination of urinary volume and
concentration, analysis for presence of abnormal constituents (e.g. protein,
blood, bacteria), blood tests, radiological tests, ultrasound and biopsy.
Routine biochemical screening for renal function and routine urinalysis is
recommended.
DISORDERS OF THE
REPRODUCTIVE SYSTEM
Anatomical
and physiological abnormalities found in men include undescended testes on one or both sides, underdeveloped penis
and scrotum, distal hypospadia and impaired sperm production. An undescended
testis may result in infertility and an increased risk of a testicular
tumour(Braun et al,1985). Secondary sex characteristics develop but can be
delayed. In women ovarian hypoplasia, hypertrophied
labia majora but poorly developed labia minora, may be found.
Most
women with learning disabilities begin periods
between the ages of 10 and 14 but several cases of
premature puberty have been reported, often associated with thyroid
disorder. Problem such as menorrhagia, irregular bleeding, dysmenorrhoea, and
pre-menstrual syndrome can also occur in women with learning disabilities although
they may be more difficult to diagnose because of difficulties in communication
(Elkin et al,1990 ) . As endocrine disorders are common in women with learning
disabilities, there may be
secondary menstrual irregularities.
Recently,
sexual awareness amongst people with learning disabilities and the need for
gynaecological care has become a focus
of concern . It is generally accepted that it is rare for women with learning
disabilities to attend for gynaecological assessment. This is of considerable
importance as routine screening, such as cervical smear screening and breast
screening advocated for women in
general is not often offered to
women with a learning disability. Examination, both of the breast and the pelvic
region, may be difficult. Greater care and considerable understanding and
empathy is required for an
examination to be successful. Regular well women checks are recommended although
issues of consent and privacy need to be borne in mind. A number of dilemmas
exist around screening of people who cannot consent.
Sexuality and consent are considered in Chapter 12.
NEUROLOGICAL AND
SKELETAL ASPECTS OF HEALTH
Numerous
neurological and musculo-skeletal abnormalities have been reported in people
with learning disabilities in particular amongst those
with cerebral palsy. These may range from general abnormalities of
stature, gait, muscle tone, speech and limb movements to specific abnormalities
e.g. atlanto-axial instability. The majority of people with learning
disabilities have short stature
although particular syndromes may be associated with tall stature e.g.
Klinefelter's syndrome. Metabolic disorders of the bone i.e. osteoporosis with
loss of bone mass may be seen in association with endocrine disorders, syndromes
like Hurler syndrome and Hunter syndrome ( Chapter 3 ) and drug therapy for
epilepsy, e.g. with phenytoin. Undetected osteoporosis may present as bone pain
or spontaneous fractures. Other minor abnormalities like collapsing flat feet
may also contribute to disability.
Cerebral
palsy is a persistant disorder of movement and posture caused by non-progressive
damage to the developing brain. Many causes can lead to cerebral palsy, but commonest factors
include pre-term birth, brain malformations and convulsions at an early age.
There
are several forms of cerebral palsy with differing neurological problems. The
types of movement disorder are generally classified as hypotonic, ataxic,
spastic, athetoid, and tremulous. The limbs may be affected by pareses of
varying degree and varying combinations (hemiplegia, paraplegia, quadriplegia).
A large number of other neurological deficits may be present depending on the
site and type of brain damage. Muscular contractures may lead to dislocation of
joints , e.g. dislocation of the hip joint and may be a cause of pain and
discomfort. Impairment of mobility, contractures, increased muscle tone and poor
posture may cause considerable difficulties.
Clinical
features of musculoskeletal disorders include joint pain, stiffness, swelling,
reduced mobility and involvement of other systemic organs. Common problems in
people with Down syndrome include subluxation and dislocation of the cervical
spine, hip, and patella. Cervical spine subluxation at the atlanto-occipital and
the atlanto-axial region is one of the potentially most serious orthopaedic
conditions encountered in persons with Down syndrome. They may present with
local neck pain, muscle weakness ,
paralysis of limbs and gait abnormalities.
On examination there may be impaired mobility of the neck, head tilt,
brisk deep tendon reflexes, extensor plantar responses and ankle clonus.
A history of neck trauma can be elicited in many cases. Acute onset is
more likely to respond to treatment than chronic symptomatology. Regular
screening has been undertaken for people with this disorder as asymptomatic
individuals may become symptomatic, leading to spinal cord injury. X-ray imaging
is recommended, although its reliability may be poor .
Restricted
sporting activities for people with learning disabilities and cervical spine
instability particularly those with Down syndrome and atlanto axial instability
include training or competition gymnastics, diving, high jump, pentathlon
and soccer. However, the restriction of involvement in sporting activities of
people with learning disabilities remains
controversial.
DISORDERS OF VISION
Ocular
abnormalities are common in people with learning disabilities
with virtually all structures of the eye having been reported to have
some associated abnormality. Visual impairment is the loss in visual acuity
resulting in partial sight to total blindness. Impairment is ten to fifteen
times greater in people with severe learning disabilities as compared to the
general population. The prevalence increases
with age (1 in 3 elderly persons may have some impairment present)
myopia, hypermetropia and astigmatism being common causes of visual impairment.
It is usually possible to test vision with standard charts but presence
of nystagmus and poor co-operation may make assessment of visual acuity
difficult.
A
number of specific ophthalmic abnormalities
are associated with particular syndromes e.g. cataracts with Down syndrome and
optic atrophy with cerebral palsy. Impairment of vision in a person with
learning disabilities can lead to difficulties in communication, loss of
mobility and a general decline in social skills.
Blepharitis
is common but is usually amenable to daily washing with water and/or baby
shampoo. Severe infections may require antibiotics. Keratoconus (conical cornea)
is a disorder of the cornea of the eye and is particularly associated with Down
syndrome. Cataracts are also associated with increasing age in adults with Down
syndrome (prevalence varies from 25% to 85% ). Blindness can result without
surgical intervention. However, only a small percentage of those affected
undergo surgical intervention. The aetiology remains unknown.
Other
common abnormalities of the eyes include strabismus, nystagmus and less
The
majority of people with learning disabilities have some abnormality of the eye
but very few of these individuals ever receive appropriate care. The possibility
of visual problems should always be considered when a person with learning
disabilities begins to lose interest in daily living skills. Many of the
pathologies are treatable and early detection and management can prevent future
visual loss and continue to maintain the individual’s quality of life. For
people who already have one handicap, prevention of another is of paramount
importance . Improved screening, provision of spectacles and magnifying glasses,
increased awareness of the problem amongst
professionals and carers can reduce
effects of this dual disability. Changes in the environment e.g. use of
contrasting colours, guide rails, adapting light levels, easier to use objects
can also improve the quality of life.
HEARING
Hearing
problems are also more common in people with learning disabilities
(Yeates,1989). Prevalence rates for
hearing impairment range from 6.8% to 56.7% (Yeates, 1992; Brookes et al ,1972)
with rates being significantly higher for older people and for people
with Down syndrome .
Types
of hearing loss include sensori-neural deafness (30%),conductive deafness
(10%),mixed (28%) and unknown (30%). The normal range of hearing is being
able to hear sounds between 0 to 15decibels in frequency. There is a slight loss
of hearing when the intensity of sound has to be between15 to 25decibels , mild
loss at 25 to 40decibels, moderate loss at 40 to 65decibels, severe loss from 65
to 95decibels and profound loss at 95decibels and above.
Conductive
loss can be due to the presence of
wax or middle ear effusions and
Several
researchers have demonstrated that individuals with impaired hearing have
impaired social functioning ( Wright et al, 1991 ) , and that hearing loss may be a factor in decline in cognitive
functioning and in auditory-verbal processing.
If
hearing loss is suspected , hearing tests should
be carried out by an
Infections
can be up to 100 times more common in people with learning disabilities.
Infections of the nose and throat may lead to involvement of the middle ear. The
cause of the increased susceptibility to infections is unknown but may be
associated with a depressed immune system, anatomical abnormalities and poor
oral hygiene.
People
with learning disabilities should
be screened regularly for hearing problems. Chronic recurrent infections may be
treated with long-term antibiotics, but surgical intervention may be necessary
for middle ear effusions. Frequent cleaning will help to
prevent wax impaction. Any resulting hearing loss may be improved with
the use of hearing aids.
ORAL HEALTH
People
with learning disabilities are predisposed to oral ill health due to dental
factors such as reduced flow of saliva making plaque deposits dense and sticky;
peridontal and gingival ill health due to tendency to mouth breath which makes
the lips and tongue dry, impaired control and movement of the tongue making the
removal of food from the mouth more difficult and poor manual dexterity which
may pose problems in brushing teeth properly and malocclusions. In addition ,
complicating factors such as side effects of treatment, e.g. thickening of the
gums with phenytoin; behavioural difficulties and presence of medical factors
such as specific syndromes lead to dental and peridontal disease.
People
with learning disabilities have a high prevalence of malocclusions. These
include lower facial anomalies and crossbiting. There is increased prevalence of
dental anomalies e.g. absent teeth, peg-shaped incisors, microdontia, and loss
of alveolar bone. Periodontal disease including necrotizing ulcerative
gingivitis is very common, with the prevalence increasing
with age.
Etiological
factors are probably multifactorial but anatomical abnormalities, saliva changes
and differences in vascular supply to the lower half of the head may predispose
to pathology. Abnormalities of the immune system probably plays an important
role. Residents in institutions appear also to be at greater risk of periodontal
disease.
Several
recommendations to improve oral hygiene for people with learning disabilities
can be made:-
1.
Regular dental assessments with focus on prevention.
2.
Increase carers’ awareness of importance of oral hygiene.
3.
Oral hygiene may be supplemented with chemical and antibacterial plaque control
(e.g. chlorhexidine).
4.
Advice on type of toothbrush including individual adaptations and correct method
of brushing teeth.
5.
Dietary advice
6.
Importance of topical fluoride application
where appropriate.
7.
Use of sugar free medication.
SKIN DISORDERS
Skin
complaints occurring in the general population may occur in people with learning
disabilities. However, particular problems are dry skin, atopic dermatitis,
alopecia areata, psoriasis and tinea pedis. Dry skin can occur in up to 70%-85%
of persons with Down syndrome (Carter and Jagasothy,1976) and is best managed
with oil soaps, keeping the skin hydrated, and use of moisturisers and
emollients. Atopic dermatitis can occur at all ages and may be treated with non
perfumed soaps, bath oils and improving hydration of the skin. Antihistamines
and steroid creams can be helpful.
Seborrhoeic
dermatitis and alopecia areata (loss of hair) occur less commonly,
may involve scalp hair,
beard and eyelashes and may be quite severe. The aetiology of hair loss unknown
but it is probably auto-immune and genetic in origin. Treatable causes such as
hypothyroidism(Scotson,1989) and adrenal failure (Bergfeld,1988)have
to be ruled out. Complete regrowth can spontaneously occur although numerous
treatment regimes using allopathic agents e.g. steroids and alternative
therapies have been used with minimal effect (Burke,K.E.1989).
Skin
complaints are common in people with learning disabilities. Irritation and
considerable distress can result leading to behavioural difficulties. Simple
effective measures have been shown to be beneficial.
ENDOCRINE DISORDERS
Normal
endocrine function is dependent on a number of organ systems with in the human
body. Normal functioning of the hypothalamus and pituitary gland in the brain
are central to maintaining normal hormonal levels. Important organs involved are
the thyroid gland, pancreas and adrenal glands.
The
most widely researched endocrine disorder is thyroid dysfunction in people with
Down syndrome. Such an association has now been well established with under
activity (hypothyroidism) and over activity (hyperthyroidism) due to congenital
and acquired causes being more common compared to the general population.
Prevalence of thyroid dysfunction increases with age, with up to half of adults
with Down Syndrome over the age of 40 years showing some evidence of thyroid
dysfunction. An association between thyroid autoimmunity and thyroid dysfunction
has been reported.
It
may be difficult to diagnose hypothyroidism clinically as some of the features
such as lethargy and weight gain may already be present (Prasher, 1995) .
Regular biochemical screening for thyroid dysfunction is therefore
recommended. The current recommendations are that those with previously normal
thyroid functions should be tested every 2 years while those with history of
thyroid disease should have them annually.
Treatment
of hypothyroidism has been shown to be beneficial and a number of case reports
have been published where, for example alopecia totalis or total hair loss has
been reversed, pseudo-dementia has resolved and an increase in social
functioning has been achieved after the administration of thyroxine replacement.
A
number of other disorders associated with hypothyroidism in people with Down
syndrome include hypoparathyroidism, diabetes mellitus and precocious sexual
development. Possible association with Alzheimer's disease and thyroid
dysfunction in adults with Down syndrome remains an interesting area of further
research.
PRIMARY HEALTH CARE
MODELS
People
with learning disabilities are susceptible to many physical illnesses, affecting
virtually all organs and bodily systems. The prevalence of such disorders is
greater than that in the general population and can have a considerable impact
on the life of a person with learning disabilities. Significant emotional and/or
behavioural disturbance and loss of
adaptive skills may result.
With
growing number of adults with learning disabilities living into middle-age and
beyond it is essential that medical care keeps pace. Deficiencies in healthcare
provision may lead to physical illnesses being missed and mis-diagnosis of both
medical and psychiatric conditions. To achieve and maintain a high quality of
life for people with learning disabilities, care professionals must be aware of
the associated illnesses. Further many people with learning disabilities may not
be able to verbalise the presence of pain, carers may not seek help and staff
may be unaware of the presence of associated physical disorders. People with
learning disabilities thus have difficulties in accessing health services in
particular those related to screening, dental and primary health services.
Subsequently significant physical morbidity may remain inadequately treated.
Roy
and Martin (1998) review the models of primary health care which have been used
so far. They are :
1.
General
Practitioner lead approach
As
the title suggests, in this model the general practitioners have taken the lead
in initiating health screening. Howells (1986 ) offered health checks to people
with learning disabilities attending a training centre and found a significant
number of unmanaged physical disorders.
Kerr
(1996) did a comprehensive health check for 28 people with learning disabilities
and compared them to matched controls in a practice based study. The outcome was
that the study group received less of the regular screening i.e. immunisation
and cervical cytology but had more outpatient appointments and saw more
specialists.
2.
Specialist
led approach
In
this model, the specialist, usually the Consultant Psychiatrist, took the lead
in health checks. The study by Wilson and Haire (1990) in Nottingham amongst
people with learning disabilities attending an adult training centre is an
example of this model. Beange (1995) carried out a community based study in the
Northshore district of Sydney, Australia .As in other studies, the higher
incidence of unmanaged health problems was demonstrated in both .
3.
Collaborative
Models
In
this model, there is collaboration between the primary health care team and the
specialist services to provide comprehensive health checks. In the first of
these, a facilitator co-ordinated people with learning disabilities having a
health check at their own general practitioner’s surgery (Martin et al, 1997).
Bollard ( 1998) discusses a model where the Community Learning Disability
Nurse’s role was extended to work with the primary health care team. Health
checks offered at GP practices were performed mostly by practice nurses. Cassidy
et al ( 1998) describe joint clinics for people with learning disabilities where
physical and psychiatric health checks are offered during a single visit to the
surgery.
In
order to reduce the undetected health problems which people with learning
disabilities have, there needs to be further training for medical students and
general practitioners. Plant ( 1997 ) demonstrated by a confidential postal
questionnaire that general practitioners often lacked confidence in caring for
people with learning disabilities. There is some confusion about what
constitutes a learning disability, degrees of learning disability, the health
needs that people with learning disabilities have and configuration of
specialist services though the general practitioners are often in a position of
knowing a great deal about these individuals’ social situations ( Whitfield et
al, 1996 ; Marshall et al, 1995 ). This can lead to practices rejecting people
with learning disabilities because of the “ perceived increase in workload “
( Chambers, 1998 ). Chambers argues
for general practitioners to be given “ protected paid time “ to carry out
proactive work. Equally, financial incentives can improve patient compliance (Giuffrida
and Torgerson, 1997 ).
The
importance of primary health care in the general population has been recognised
by successive governments. The Health of the Nation objectives for people with
learning disabilities focused on improvement of both their physical and mental
health. The White Paper, The NHS: Modern and Dependable (1997 ) acknowledges the
role of primary health care. The concepts in it, e.g. the establishment of
Primary Care Groups and Clinical Governance at
primary care level are opportunities to improve and maintain the health
of this vulnerable group. Improvement in the arena of physical health will
eventually improve their quality of life.
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