·
Services
for Elderly people with a learning disabilityCHAPTER 8: TOWARDS AN INTEGRATED HEALTH
SERVICE
ASHOK ROY,
MEERA ROY
UNDERSTANDING HEALTH NEEDS
The
1991 reforms in the National Health Service have created fundamental changes in
the manner in which services are conceptualized, planned and delivered. While
social services have a leading role in commissioning services, health
authorities have a responsibility to ensure the provision of services for people
with a learning disability who have significant health problems. These problems
are classified into three categories. An
understanding of this is essential in planning and providing integrated
services. The 1998 reforms in the health service also provide a new framework
for this.
The first set of health problems is
those encountered in general practice. Common examples include difficulties in
seeing and hearing, obesity, hypertension, diabetes and heart disease. There is
evidence that people with a learning disability have a higher prevalence of some
of these conditions and a lower consultation rate with their general
practitioners than the general population (Wilson & Haire,1990; Kerr,1996).
The factors that lead to this need explanation. Sometimes people with a learning
disability and their carers are not aware of potential health problems
especially if they do not produce discomfort or distress. A decline in the level
of functioning is attributed wrongly to the learning disability itself. There
are often difficulties in attending the general practitioner’s surgery due to
having to wait in crowded areas. Consultation may be made more difficult due to
communication problems that health professionals encounter when dealing with
people with a learning disability. Carers may be dealing with their own feelings
about the disabled person that may have to be dealt with before the client’s
needs are addressed. Common feelings include guilt, shame and anger. The final
result maybe that the individual is not thoroughly examined and the condition
remains undetected. This combination of factors can lead to health needs not
being recognized and met. These must be taken account of when planning and
providing services.
The
second set of problems include a variety of disorders and conditions which are
more frequently prevalent in people with a learning disability and conditions
whose manifestation is significantly altered due to the presence of a learning
disability.
·
Psychiatric disorders include
the whole range of conditions described in Chapter 4. They include
schizophrenia, depression and neurotic disorders including phobias. These are
more frequently encountered in people with a learning disability. They
frequently coexist with other physical, developmental and psychosocial factors.
This can make mental disorders more difficult to diagnose and treat.
Manifestations of depression can, for example change with increasingly severe
degrees of learning disability and episodic screaming and self-injury may
indicate a depressed mood.
·
Examples of behaviour disorders
include aggression, excessive eating and drinking, restlessness and wandering.
·
Physical disorders include
epilepsy (discussed in Chapter 6), cerebral palsy and complex sensory handicaps
(discussed in Chapter 5). These conditions become more prevalent with increasing
degrees of learning disability. Epilepsy is frequently more difficult to
diagnose and is often more resistant to treatment. Sensory difficulties have
usually been underestimated in people with a learning disability, as they have
been difficult to detect and get overlooked.
There are several syndromes frequently encountered in people with a
learning disability. These include Down syndrome, fragile X syndrome and
congenital rubella. These conditions have several physical disorders that can
co-exist. An individual with Down syndrome may have severe learning disability,
congenital heart defects, hearing impairments and dementia.
·
Developmental disorders include
autism and Asperger’s syndrome and are described in Chapter 7
The
third set of health problems is more frequently seen in district general
hospitals. Diseases in this broad category are similar to those affecting the
general population. Common examples are serious conditions such as chest
infections and fractured limbs as a result of injury usually needing inpatient
care. These situations can lead to particular problems for people with a
learning disability because they may not understand what is happening to them
and why they have had to leave home and be cared for by unfamiliar people. This
could lead to apprehension and lack of cooperation with treatment. The staff are
usually not accustomed to dealing with people with a learning disability. They
can find it difficult to set aside enough time to communicate effectively and
explain what is going on. They may
also find it difficult to explain the reasons for blood tests and other
investigations.
SERVICE
COMPONENTS
A
comprehensive and integrated service would have several key components.
Needs
Assessment
The
first step in planning services is to have an accurate assessment of the needs
of the population to be served. It is therefore necessary to identify the
population with a learning disability in need of services. This can be done by
creating a register of service users or by checking the general practitioner
lists in the area. Sometimes, epidemiological data are used to calculate the
figures for a given area. After this baseline population is identified, it is
useful to know the prevalence of health problems so that the volume and
configuration of services can be determined. The size and content of the
community teams can be determined for a particular catchment area so that they
are able to deal with referrals appropriately. Data about coexisting
psychiatric, psychological, developmental, physical and psychosocial
disabilities in the population can provide an indication of the number of
professionals and their skills, the number and range of day services, respite
care assessment and treatment facilities and the priorities for service. These
agencies need to agree priorities for health services and how they should fund them. Lack of agreement lead to gaps appearing in
services and health needs not being met for individuals and groups of people.
Surveys have shown that only a fraction of health authorities provide a full
range of services for people with a learning disability
(Roy & Cumella, 1993) .
Prevention
Primary
prevention is concerned with avoiding the onset of a particular condition
producing a learning disability. Genetic counselling to families of people with
a learning disability, for example, aims to reduce the risk of recurrence of the
particular condition. The first step in this process is the confirmation the
diagnosis itself. This often involves extensive history taking followed by
physical, biochemical, cytogenetic and molecular genetic testing. If the nature
of inheritance is known or can be discerned from the family tree, then the risk
of recurrence could be determined. Immunisation against diseases like rubella
which are known to cause severe multiple disabilities have resulted in a marked
reduction in the incidence of such births.
Universal
screening against disabling conditions such as phenylketonuria is an example of
secondary prevention where the disease is detected at birth and specific
interventions such as dietary regimes are put into place to prevent the onset of
learning disability. Replacement thyroxine for newborn babies diagnosed to have
hypothyroidism is a similar strategy.
Tertiary
prevention is aimed at minimising the sequelae of an existing learning
disability. Examples include regular hearing, visual and thyroid checks in
people with Down syndrome and physiotherapy for children with cerebral palsy.
Other strategies such as access to improved antenatal care, accident prevention
and measures to counteract understimulating and deprived home environments
should be planned for and provided to at risk groups in the community. Diagnosis
and vigorous management of delays in motor skills and communication can help in
reducing the adverse physical and psychological effects that can occur.
Preventive
strategies may help in reducing the incidence of certain disabling conditions.
At the same time improved resuscitation techniques for examples can lead to the
increased survival of very low birth weight babies a proportion of who develop
learning disabilities.
Assessment
and Treatment
Careful assessment is the first step in planning and implementing treatment programmes. This can take place in a variety of settings such as outpatient clinics, day services, in people’s own homes or in specialised units. Due to the interaction between the individual and the environment it is sometimes important to do assessments in different environments.
Assessment
The first step is to obtain a full account of the person’s difficulties from carers. If they go elsewhere during the day or use respite care, then it would be useful to find out if the difficulties occur in those settings. The information obtained should include early development, schooling, friendships, personality features, current occupation, previous medical history and psychiatric history including that of any offending behaviour and substance abuse. In addition to a description of the presenting complaints it is important to obtain details of any change in appetite, sleep, excretion, mood, skills and weight.
The degree of disability will influence how an examination may be carried out. With more able individuals with good communication skills, this is not significantly different from the general population. They can provide information about the difficulties that led them to seek help. They can also describe their emotions and feelings. As the degree of disability increases, the examiner requires more specialised skills to carry out assessments and may need to see the individual on more then one occasion in settings where the latter may be more at home with someone who they trust. It would be important to get information from people who knew the individual well. In addition to finding out what they think their difficulties are, the examiner would need to look for evidence suggestive of mental illness. Disturbances in the form of thinking would be manifested by abnormalities in linking thoughts together in a clear sequence and at a normal speed. Disturbances in the content of thinking would be characterised by the presence of delusions. Perceptual abnormalities include auditory and visual hallucinations. Mood disorders include persistent lowering of mood or mood swings. Passivity phenomena are characterised by feelings of being controlled by external agencies. With people with a greater degree of disability the examiner may have to make deductions from the individual’s behaviours. These may include, for example, a careful examination of patterns of screaming or self-injurious behaviour over a period of time. Behaviour problems can thus be a symptom of a mental illness. It can also serve as a dysfunctional form of communication or the avoidance of a task or situation. Some times the behaviour problems are a part of a specific syndrome (e.g. Prader Willi syndrome, Lesch Nyhan syndrome).
A thorough physical examination is central to any assessments. This should include a measurement of blood pressure and the body mass index (BMI) in view of the high prevalence of obesity in people with a learning disability. This should be followed by a comprehensive evaluation of all systems including the cardiovascular system (heart and blood vessels), respiratory system (lungs), gastrointestinal system (bowel) and central nervous system (brain and spinal cord). Investigations such as full blood counts, liver, kidney and thyroid functions and B12 and folate levels should be done routinely. Where epileptic activity is suspected electro encephalograms including ambulatory recordings may be necessary. Brain scans of various types are helpful to determine brain lesions which may help in localising the causes of disability and planning treatments. Further investigations will depend on any abnormalities detected.
In order to plan a comprehensive treatment package it is important to have assessments by other members of the multidisciplinary team (refer chapter 9).
Rating scales such as the Hamilton Depression Rating Scale can be used for people with mild learning disabilities. In addition there are scales such. as the Leicester Kettering scale(Cooper& Collacot,1996) which are specifically designed to look for mood disorders in people with severe learning disabilities. Checklists are available to look at adaptive and maladaptive behaviours, autism and to monitor the efficacy of treatment programmes. They are useful aids to diagnosis and monitoring of treatments. In older people with Down syndrome it is useful to have a baseline of cognitive function as they appear to have an early onset of dementia.
As this client group usually has multiple difficulties, the system of multiaxial diagnosis(ICD 10, 1996) is a useful way of listing the areas of concern. The various axes are:
Axis 1 - Severity of learning disability and problem behaviours
Axis 11 - Associated medical conditions
Axis 111 – Associated psychiatric and developmental disorders
Axis 1V – Global assessment of psychosocial disability
Axis V – Associated abnormal psychosocial situations
This system ensures that all the difficulties are dealt with appropriately by anchoring treatment plans on the needs highlighted by the multiaxial diagnosis.
Treatment
A comprehensive diagnosis ensures that all the problems are dealt with systematically. People with learning disabilities often have undiagnosed hearing and visual problems. Correction in these areas will obviously improve their quality of life. Obesity and vitamin deficiencies should be corrected both by supplements and in the long term with advice on healthy eating. Thyroid dysfunction is common in people with Down syndrome. Impaired hepatic and renal function may have a bearing on long term treatment with anticonvulsants and lithium.
People with learning disabilities and additional mental illness respond to the pharmacological therapies available to the general population. That people with learning disabilities are more sensitive to psychotropic medication compared to the general population is not borne out in practice. They require drugs in the usual therapeutic range to be of benefit. Carbamazepine is often used to stabilise recurrent mood disorders and an advantage over lithium is that it is easier to maintain therapeutic levels without relying on blood tests as some people with learning disabilities are extremely distressed by blood tests. As in the general population, depot preparations of antipsychotic drugs have an advantage over oral preparations as they improve compliance.
A significant number of people with learning disabilities have seizure disorders and better control of epilepsy is an important part of treatment. The underlying brain damage means that epilepsy control often requires more than one anticonvulsant. Even with using long acting preparations and the newer anticonvulsants, some times it is not possible to eliminate seizures altogether. Some anticonvulsants can produce impairments in cognitive functioning.
Treatment of physical disorders has to be an integral part of the comprehensive care package. Usually this requires interventions by other medical and surgical specialists. As psychiatric and physical difficulties are only part of an individual’s problem, multidisciplinary care packages are the cornerstone of treatment programmes. For example, eating problems are common in this client group and interventions by dieticians can be extremely helpful. As they may have physical disabilities an occupational therapist may be able to advice on utensils and drinking cups etc. Together with physiotherapists, they can improve seating and mobility. They can advice carers on aids and appliances at home, safe lifting and handling techniques and increased independence. Physiotherapists are able to improve and maintain mobility through hydrotherapy etc. As communication difficulties often contribute to behaviour difficulties any aids to improving communication should improve behaviours and there fore communication therapists make important contributions to care packages. For a more detailed account on multidisciplinary working, see chapter 9.
Behaviour difficulties may be the result of environmental difficulties. It may be that the individual is not happy with particular fellow residents. A move away from the particular person may improve behaviour. People with autism are happier in a structured and predictable environment with high staff client ratio. Thus a close look at environmental issues and their manipulation will pay dividends in improved behaviours.
Family interactions are also important as certain behaviour difficulties may occur only at home and not at the day centre or school. This may be due to the carers being inconsistent in their approach to the individual and some advice on this could improve the situation. As there often are unresolved grief issues, family therapy can be beneficial. Interventions to reduce expressed emotions will improve the outcome for those with additional mental health problems.
Cognitive and behavioural approaches are also useful and relaxation techniques, anxiety management and anger management used widely. Some benefit from having a structured behaviour programme. Others benefit from individual counselling and group work addressing personal relationships and sexuality issues. More specialised groups for fire raisers and sex offenders take place in forensic learning disability units.
The Care Management approach which followed the Community Care Act,1991, is widely used in learning disability services. The Care Manager undertakes a comprehensive assessment of the person’s needs including health needs and draws up a care package involving the person, carers and relevant professionals. The Care Manager then purchases the care package from statutory or independent sector providers using funding from Social Services and or Health Authority depending on whether the needs are due to social or health factors alone or due to a combination of factors.
The Care Programme Approach (CPA) is a recent Government initiative for delivering mental health services. This is useful those with learning disabilities who have an additional mental health problem. For those who do not have a severe and enduring mental health need, a basic CPA may suffice. Those with severe and enduring mental health need require an enhanced CPA. The CPA assessment is similar to the assessment under Care Management and may identify the need for a Care Manager to be appointed. The two approaches therefore are not mutually exclusive and would enhance care for a small group of people with dual diagnoses. The assessment under CPA may suggest that the individual may need to be placed on a Supervision Register to co-ordinate care. As people with learning disabilities are also liable to receive treatments under the Mental Health Act 1983, the CPA assessment may suggest a Supervised Discharge from section.
Assessment
and treatment for people with learning disabilities with additional health needs
is eclectic and draws on the methods used in other branches of psychiatry and
medicine. As health problems are only a part of the full picture, the assessment
and the care package have to be multidisciplinary
Improved Care
From General Practitioners
There
are several methods of improving the quality of care that general practitioners
(GP) provide people with a learning disability and their carers.
Studies have shown that many GPs do not have adequate information about
services for people with a learning disability in their local area
(Marshall,et.al,1996)).Closure of hospital based services and the development of
community based facilities have led to local service provision being in a state
of flux. General practitioners have to be updated regularly on the local
facilities and community teams. Sometimes they may not have much information
about the people with a learning disability on their list and their current
health status. It has been shown that comprehensive and regular health checks
lead to the detection of a range of health problems such as obesity,
hypertension, diabetes, ear problems, drug toxicity, dental caries and
hypothyroidism (Martin,et.al,1997). Most of the conditions detected are easily
treated at the GP’s surgery. Sometimes referral to specialist services is
necessary. Attention is drawn to the health of the carers and their ability to
cope. Support can be sought from respite care schemes and the local community
teams. Strong working links between the GPs and their staff one hand and the
community learning disability teams on the other can provide an umbrella of
services to meet the health needs of the people with a learning disability.
Mental Health
Services
In
order to meet the mental health needs of the people with learning disabilities,
services have to be comprehensive and flexible. The most important professional
group providing a service is the learning disability team. These teams are
described in chapter 9. Psychiatrists, psychologists, nurses and other
therapists can jointly assess and meet the majority of the mental health needs
of people with a learning disability. Assessments and treatments are often
likely to be in the individual’s home or workplace. The aim of assessment is
to arrive at an accurate diagnosis and a better understanding of the
individual’s problems. This then helps the team work with the individual to
produce a treatment plan, which addresses all the main problems. Effective
interventions can lead to improvements that can be measured ( ? mention HONOD-LD)
. The duration of treatment is variable and in some instances can take several
months or years. The treatment of an uncomplicated depressive illness or a
temporary loss of seizure control in an individual with epilepsy may be
completed in a few weeks. In contrast, the implementation of a management
strategy for an individual with a severe learning disability, autism and severe
self-injurious behaviour may take years to produce measurable change.
In
general, professionals working in learning disability provide psychiatric
services for people with a severe learning disability. For people with a mild
learning disability it is possible to provide a service jointly with staff from
general psychiatry services. Team members working jointly can share knowledge
and facilities to meet the needs of this client group.
Sometimes
it is necessary to remove the individual from his normal environment to a
specialised unit for more comprehensive interventions. The various settings
are considered below
·
Home
and Work
In
this situation, the person with a mental health need is assessed in familiar
surroundings to look for factors that precipitate, exacerbate and maintain
problem behaviours. Nurses, psychologists and behaviour therapists, for example,
can make observations and make environmental changes in a systematic way to try
and modify behaviour. They can educate cares on mental disorders and improve
their understanding of the problems.
·
Outpatient
Clinics
This
is a common setting for psychiatrists to work in. History taking, mental and
physical examinations and investigations can be carried out here. Treatments
such as advice, counselling and psychotherapy are also provided. Joint working
between psychiatrists and other professions are usual, as are joint clinics with
other specialists such as paediatricians, neurologists and geneticists.
·
Day
Services
Intensive,
multiprofessional assessments and treatments are sometimes carried in
specialised, well-staffed day units, which provide opportunities for assessment,
treatment, training and education. It provides an opportunity to monitor the
effects of treatment, working with carers and families and provides support to
access community facilities as well as leisure and work.
·
In-Patient
Units
When
psychiatric and behavioural problems are too severe or dangerous to manage at
home, it may be necessary to move the individual to specialised residential
assessment and treatment facilities for varying periods of time. Sometimes this
may be done on an involuntary basis by using the Mental Health Act when the
individuals are a danger to themselves or others on account of a mental
disorder. The Act is discussed in chapter 12. Common reasons for admission would
be behaviour problems such as severe aggression or self-injury, severe mental
illnesses, offending behaviour and severe epilepsy requiring urgent medication
review. Specialised well-trained multidisciplinary teams are able to assess and
treat the individual around the clock by providing close observation and
supervision, initiating new types of treatment and in some cases, providing a
secure and predictable environment. It would be possible, for instance, to
commence treatment with a different drug,e.g. lithium or clozapine which need
very close monitoring initially. It can also help examine emotional
relationships within families and provide an opportunity for planning the
future.
An
important part of coordinating and providing a comprehensive service to a
population with diverse and complicated health needs is joint working with
professionals in other services. These include other psychiatric specialties
such as child psychiatry and forensic psychiatry and other medical personnel
such as paediatricians, school doctors and dentists. Good joint working can lead
to the development of specialised
services that can now be described.
·
Services
for Children and Adolescents with Mental Health Needs
The
starting point for this service is clear agreements and joint working between
psychiatrists in learning disability and the community learning disability
teams, child psychiatrists, paediatricians and the children’s services. The
health services then need to work closely with social services and education.
Community paediatricians working with specialised teams in child developmental
centres usually detect children with generalised developmental delay. There
should be good links between these centres and local disability teams. When the
learning disability is apparent at birth (e.g. Down’s syndrome) the learning
disability teams can provide advice and support to the families at an early
stage. When the disability is not apparent in early life or there is parental
resistance to the acceptance of the disability, there may be a delay in the
involvement of the learning disability teams. Early intervention can be of help
with sleep problems, incontinence, over-activity and self -injury. Children with
significant emotional and behaviour problems need help from psychiatrists and
psychologists from both services along with education service staff, nurses and
social workers. There needs to be clarity amongst teachers and parents about how
to access appropriate services. Similar clarity needs to be present between
mental health services and child health services for the management of children
with coexisting physical disorders such as epilepsy, cerebral palsy and
congenital heart disease.
Adolescents
with learning disability and mental health problems often find it difficult
accessing appropriate services due to poor coordination between learning
disability, general psychiatry, forensic psychiatry and sometimes services for
people with autism.
·
Services
for people with Autism and Mental Health Needs
As
mentioned in Chapter 7, people with autism and other pervasive developmental
disorders can develop emotional and behaviour problems. Recently depression,
anxiety, aggression, self-injury and psychotic disorders have been reported in
this population (Ref). In order to deal with these problems, the whole range of
assessment and treatment services have to be made available. There are some
specific issues that need to be borne in mind. The main features of autism
(impaired communication, poor social interactions and restricted stereotypical
behaviour) can themselves mimic various mental illnesses such as
obsessive-compulsive disorder, depression and psychotic conditions. The
communication problem often makes it difficult to elicit the symptoms of
illness. Another problem is that there is often coexists a varying degree of
learning disability, which has to be assessed and taken into account when
planning treatment. Tranquillisers may produce excitement and restlessness.
Treatments are more difficult to implement. Drugs sometimes have idiosyncratic
and paradoxical effects. Behavioural treatments can be difficult to generalise
so that strategies that work in one setting (e.g. clinic) do not work in another
(e.g. home). This can make progress with treatment slow and more labour
intensive. Consistency of the
environment and in handling along with a predictable routine is essential for
making progress with assessment and treatment. A further problem is that on
account of the poor social skills, effective treatment cannot be provided easily
in group settings and most long term treatment programmes have to individually
tailored. In some instances of severe psychiatric and behavioural problems,
change is very slow and strategies have to be devised to reduce the dangers to
the individuals and those around them while maximising opportunities to develop
and have a good quality of life. It is vital that staff working in these
services have a good understanding of autism and mental illnesses so that they
can understand the individuals they are caring for and thus make effective care
plans.
Case Example
A
16-year-old boy was referred for in patient assessment and treatment from a
special school for autistic children for the management of epilepsy and severe
self-injurious behaviour. His antiepileptic medication was reviewed and his
seizures were reduced. After careful observation over three months it became
apparent that some of his self-injury was a symptom of an underlying mood
disorder (depression) as it increased when he looked sad, lost his appetite and
had sleep disturbance. Other self-injurious behaviours were present only when he
was asked to do activities, which he did not feel like doing at the time.
Treatment with Lithium resulted in a reduction of the periodic self-injury.
Exploration of his likes and dislikes and improved planning of his day services
with a reduction of group activities lead to a reduction of the self-injury that
had a task avoidance role.
·
Services
for people with Personality Abnormalities
This
is a heterogeneous group of people who have deeply ingrained and enduring
behaviour patterns that affect multiple domains of their lives such as
psychological, social, occupational and interpersonal functioning. Common types
encountered in services are people with emotionally unstable and dissocial
personality disorders. Assessment and treatment is difficult and time consuming.
This is because it is not yet a widely used diagnosis. There appears to be
diagnostic overshadowing by mental illnesses. The differentiation is important
because though they are useful in the treatment of various mental illnesses,
antipsychotic medications are of more limited benefit in the management of
personality disorders and are usually used as adjuncts to psychological and
behavioural treatments.
Lithium
is useful in the management of mood swings and aggression. Anti-psychotic drugs
have been used for the reduction of anger. Antidepressants have been used in the
management of associated depression and antilibidinal drugs are used as part of
the treatment of sex offenders. Anti-anxiety drugs have been used in short
spells to control anxiety.
Common
psychological measures used are social skills training, anger management,
psychotherapeutic approaches such as cognitive therapy. These treatments are
usually provided along with opportunities for education and work.
·
Services
for Offenders
Services for people with a learning disability who show offending behaviour need to take into account the level of learning disability, nature of the offence and the degree of security required. People with mild learning disability can receive their treatment from general forensic services. If, however the learning disability were significant, then the individual would need input from forensic learning disability specialists. The relationship between offending behaviour, mental illness and behaviour disorders can be represented diagrammatically.
There
are significant overlaps that must be borne in mind when assessing and treating
people with offending behaviours. A comprehensive assessment focuses on
psychiatric status, personality traits, educational attainment, social skills,
relationships, employment and leisure opportunities. An individual with a
depressive illness and communication difficulty may display aggression, which in
turn may manifest as offending behaviour such as fire setting. Failure to
diagnose and treat the depression is likely to lead to recurrent offending.
It is not uncommon for a person with a emotionally unstable personality
disorder to be involved in assaults against others which may improve with
relaxation and anger management as well as engaging in structured supported
daytime occupation.
Specific
treatment programmes have been designed to help people with a learning
disability who have committed arson and sex offences. The treatment programmes
are based on those provided to people without a learning disability and modified
for use in this population. The treatment is given to carefully screened and
selected groups. The treatment aims to help the individual to acknowledge his
problem, understand the reasons for offending, devise strategies and use them to
reduce reoffending.
Community
teams, specialised forensic teams, probation and social services deal with
people with a learning disability who commit offences They can often be diverted
from courts to the health service by close coordination between the police and
courts and health professionals. In many instances, the assessment and treatment
can be carried out in the community. With more serious offences, increasing
amount of supervision will be necessary. Facilities which provide more security
such as regional secure units and special hospitals are described in chapter 12.
An individual’s dangerousness has to be continually assessed and the level of
security required needs to be matched to the risk the individual poses. After
treatment, individuals can move from secure facilities with perimeter fencing to
less secure, well staffed units, eventually moving to the community with
support.
·
Services
for Elderly people with a learning disability
As
people with a learning disability grow older, they find it difficult to access
mainstream services for the elderly due to their intellectual and communication
difficulties. People with Down’s syndrome tend to age prematurely and need to
have regular surveillance to ensure that problems such as hearing and visual
defects, thyroid disorders and dementia are detected early. Some of these issues
are further discussed in chapter 11.
General
Hospital Services
Staff
in general hospitals needs to receive training to raise their awareness about
the nature of health and communication difficulties that the people with
learning disabilities may have. There needs to be more awareness about the
difficulties in getting informed consent. This means that the planned treatment
needs to be explained in a manner appropriate to the person’s communication
ability. Verbal communication may have to be supported by the use of signs and
symbols. Some treatments may be more difficult to explain than others . A dental
extraction may, for example, be easier to explain than a complex treatment
involving combination of drugs for a chronic bowel disease. It must also be
remembered that if an adult with a learning disability is unable to give
informed consent then no other individual can give consent on his behalf. The
treatment then needs to be discussed with people who are involved with the
person and carried out in the person’s best interests. The situation is more
complex if the treatment will affect the person’s ability to have children.
This is further discussed in chapter13.
Agreements
should be in place with local hospitals for access to beds for both planned and
emergency treatments. Community learning disability teams can provide support
for people with a learning disability using out patient and in patient
facilities. Support is also needed to access x ray departments and laboratories
for investigations.
PRIORITIES
FOR THE FUTURE
One
of the most important issues to be resolved in service planning and delivery in
the future is that of coordination between health services and social services.
Social services are regarded as being the lead agency for services for people
with a learning disability. In dealing with people with additional health needs,
there is a need for clarity of roles and responsibilities between the agencies.
Lack of clarity has lead to delay in the provision of services and patchy
service development with inevitable waste of resources. A shared understanding
of health needs, responsibility in planning and provision along with pooling of
resources may help in developing comprehensive, responsive and local services.
A
second priority area is the need to increase the involvement of general
practitioners in the delivery of services. This involves further raising of
awareness of the health needs of this population along with more information
about specialised services available and closer working between them and
community learning disability teams.
A
third area is to make families and carers as well as all staff working in
learning disability services e.g. schools and day centres aware of the health
needs of people with learning disability. Lack of knowledge of health problems
can lead to serious consequences such as worsening of health and wrong
attribution of this to the learning disability itself. Behaviour problems and
other changes in heath status must trigger a full assessment and appropriate
treatment.
The
publication of the document “Signposts for Success in Commissioning and
Providing Health Services for People with Learning Disabilities” has provided
comprehensive guidelines for good practice in shaping health services for the
future.
REFERENCES
Clarke,
D. , Vella, J. ( 1998) Psychiatric disorders in People with Autism. Private
Communication.
Cooper,
S. A. , Collacot ,R.A.(1996) Depressive episodes in adults with learning
disability. Irish Journal of Psychological Medicine, 13, 105-113.
Kerr,
M. P., Richards, D. , Glover, G. (1996) Primary care for people with an
intellectual disability- A group practice survey. Journal of Applied Research in
Intellectual Disabilities. Vol.9, 347-352.
Marshall,
S., Martin, D. M., Myles, F. (1996) Survey of GP’s views of learning
disability services. British Journal of Nursing. 5, 488-493.
Martin,
D. M. , Roy, A. , Wells, M. B. (1997) Health Gains through health checks :
Improving Access to primary health care for people with intellectual disability.
Journal of Intellectual Disability Research. Vol. 41, part 5, 401-408
Roy,
A., Cumella, S.(1993) Developing local services for people with a learning
disability and a psychiatric disorder. Psychiatric Bulletin, 17, 215-217.
Wilson,
D. N. , Haire, A. (1990) Health care screening for people with mental handicap
living in the community. British Medical Journal 301,1379-1381.
World
Health Organisation (1996) ICD 10
Guide for Mental Retardation: Geneva.
FURTHER
READING
Department
of Health (1998) Signposts for Success in Commissioning and Providing Health
Services for People with Learning Disabilities.
Department
of Health (1992) Health Services for People with Learning Disabilities (Mental
Handicap). Health Service Guidelines HSG (92) 42.
Department
of Health (1992) Social Care for Adults with Learning Disabilities (Mental
Handicap). Local Authority Circular LAC (92) 15.
Department
of Health (1995) The Health of the Nation: A Strategy for People with Learning
Disabilities. Dept. of Health: Wetherby.
Royal
College of Psychiatrists (1997) Meeting the Mental Health Needs of People with
Learning Disabilities. Part I Adults with Mild Learning Disability. Part II
Elderly People with Learning Disabilities. Council Report CR 56. RCPsych: London