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Rationale for this curriculum statement

Due to normalisation,1 the large mental handicap hospitals are now empty and all people
with learning disabilities now have a general practitioner (GP). There are over 200,000
patients with moderate, severe or profound learning disabilities, (intellectual disabilities),
living with their families, in residential care homes or in supported living.2 These patients
will have been identified before age 18 and will have an IQ estimated at less than 70.

Thecondition is life long, and may be defined3,4 as ‘significantly reduced ability to understand
new and complex information, to learn new skills (impaired intelligence) with a reduced
ability to cope independently (impaired social functioning), starting before adulthood with a
lasting effect on development’. Often there are associated co-morbidities, in particular
epilepsy, mental illness and behavioural disorders.

Table 1: Prevalence – a list of the commoner conditions
Diagnosis Possible number of patients on GP list of
2000
Down’s syndrome 2
Fragile X syndrome 1
Cerebral palsy 1
Autistic spectrum disorder 1
Miscellaneous conditions 3

These figures represent the number of patients that will have an intellectual disabilities
condition in an ‘average’ list – however, it fails to represent the impact that this has on GP
workload and social services:
• Patients with learning disabilities have 2.5 times as many associated medical
problems as non-learning disabled control patients5
• The number of repeat prescription drugs prescribed by primary care are about three
times those for non-learning disabled control patients
• Learning disability is a major economic burden on the NHS, the local authority social
services and on the social security system.

Patients with learning disabilities have an increased incidence of psychiatric illness,
epilepsy and behavioural difficulties. About 30% have epilepsy, and perceptual problems
are very common as over 30% have visual problems and over 30% have hearing problems.
A large proportion of those with Down’s syndrome develop dementia and some become
hypothyroid. Continence and ambulation problems are extremely common. Many are
unable to take responsibility for their own health or read instructions, and are dependent on
a range of family and paid carers, because of their limited intellectual capacity.

Morbidity and mortality rates are considerably increased and life expectancy significantly
reduced.7 It is believed that these adverse findings could be significantly reduced by better
training of clinicians, better communications and increased continuity of care.
Many authorities believe that these patients with significant clinical conditions would
benefit from being identified from a learning disability register so that they may be offered
regular structured health reviews,8 with implementation of the resulting health action plan.

As psychiatric illness is common and difficult to identify, the Psychiatric Assessment
Schedule for Adults with Development Disability (PAS-ADD) questionnaire9 or similar
validated tool, may also be useful.

UK health priorities

Valuing People,2 the first government white paper for people with learning disabilities for 30
years, sets out the government strategies including health. There are perceived health
inequalities for this vulnerable group. Access to primary care is one issue highlighted by
Mencap’s Campaign Treat me Right10 and the Disability Rights Commission Formal
Investigation.11

The closure of the large mental handicap hospitals has led to relocation of patients, some
nursing staff and consultants into the community. Primary care is now regarded as the main
service provider for all patients with learning disabilities with support from the specialist
community learning disabilities teams, which usually include consultant psychiatrists and
nurses.
Valuing People set the following targets for patients with learning disabilities (PWLD):
• Health facilitators will be appointed from each local community team to support
PWLD in getting the health care they need
• All PWLD will be registered with a GP by 2004
• All PWLD will have a Health Action Plan by June 2005.
The intention is that GPs can identify their PWLD to offer additional services, for example
health reviews/action plans that may include medication review, flu vaccination, and checks
of sight and hearing.
A comprehensive list of achievable targets for health checks for people with learning
disabilities is described by Beange et al.;12minimum annual checks required to be offered to
those in residential care homes consist of ‘sight and hearing, review of medication and any
associated condition that is not the primary underlying condition’.13
The Mental Capacity Bill will formalise financial and welfare arrangements for those
PWLD who lack the capacity to decide for themselves. Adults are usually assumed to have
capacity to decide for themselves but when this is in doubt, as with PWLD, their capacity
may need to be assessed before major medical and life decisions, for example about
operations or change of residence, are taken.
In October 2004 the National Institute for Health and Clinical Excellence (NICE)
published guidelines for the management of epilepsy in primary and secondary care.14
Separate guidance for patients with intellectual disabilities preceded these guidelines.15

[LEARNING OUTCOMES]

The following learning objectives describe the knowledge, skills and attitudes that a GP
requires when managing people with learning disabilities (also called intellectual
disabilities).
This curriculum statement should be read in conjunction with the other RCGP curriculum
statements in the series. The full range of generic competencies is described in the core RCGP
curriculum statement 1, Being a General Practitioner.
Primary care management
• Demonstrate an awareness that a significant minority of any practice population
will include patients who have mild learning disabilities, who may need no
particular special services, but who may have reading, writing and comprehension
difficulties.
• Demonstrate an awareness that there will be a few with special needs accessing
services with moderate, severe and profound learning disabilities who need to be
identified, monitored and reviewed appropriately.
• Demonstrate an awareness of likely associated conditions, and the knowledge of
where to obtain specialist help and advice.
Person-centred care
• Demonstrate an awareness of the particular importance of a person-centred
approach when consulting, often with communications involving carers.
• Demonstrate respect for the patient’s autonomy, which may be limited, and an
awareness of how communicating via carers may skew the doctor–patient
relationship.
• Demonstrate an awareness of residential situations, and attendance at day centres.
• Demonstrate the ability to optimise communication through the use of consulting
skills and communication aids.
• Demonstrate an understanding of the importance of continuity of care in this group.
• Demonstrate an awareness of the issues of capacity and consent, and the
mechanisms by which these can be determined.
Specific problem-solving skills
• Describe how psychiatric and physical illness may present atypically in patients
with learning disabilities who have sensory, communication and cognitive
difficulties.
• Demonstrate an understanding of the need to use additional enquiry, appropriate
tests and careful examination in patients unable to describe or verbalise symptoms.
• Demonstrate an awareness of the concept of diagnostic overshadowing (see
Appendix 1).
A comprehensive approach
• Describe the associated medical problems in commonly encountered conditions that
make up learning disabilities, including Down’s and fragile X syndromes, cerebral
palsy and autistic spectrum disorder.
• Demonstrate an understanding of how health can be overlooked in PWLD and the
remedial steps, such as health promotion, that can be taken.
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Community orientation
• Demonstrate an awareness that the health needs of patients with learning
disabilities are met appropriately by primary care and community services.
• Describe the roles of paid carers, respite care opportunities, voluntary and statutory
agencies and an ability to work in partnership with them so there is cooperation
without duplication.
A holistic approach
• Demonstrate a holistic approach to patients with learning disabilities, considering
likely bio—psycho–social and cultural factors.
• Describe the impact of learning disabilities on family dynamics and the implications
for physical, psychological and social morbidity in the patient’s carers.
Contextual aspects
• Demonstrate an awareness of the need to provide more time in the consultation in
order to deal more effectively with people with learning disabilities.
• Demonstrate an understanding of the impact of the doctor’s working environment on
the care provided to PWLD, e.g. the measures taken to compensate for sensory
impairment.
Attitudinal aspects
• Demonstrate an understanding that all citizens should have equal rights to health,
and equitable access to health and health information according to their needs.
• Demonstrate an understanding that integration is not simply a matter of healthcare
professionals acquiring skills but rather of healthcare professionals showing
commitment. Inclusion begins with commitment to the development of fully
accessible services.16
• Demonstrate an understanding that PWLD are more prone to the effects of prejudice
and unfair discrimination, and that doctors have a duty to recognise this within
themselves, other individuals and within systems, and to take remedial action.
Scientific aspects
• Demonstrate an awareness of the evidence regarding the health needs of people with
learning disabilities (see Appendix 2).
• Demonstrate an understanding of the evidence regarding the effectiveness of routine
health interventions.
• Demonstrate an understanding of the importance of developing and maintaining
continuing learning on physician-based issues that are barriers to health care
including:
o a lack of specialist knowledge about health issues of people with intellectual
disabilities
o a lack of awareness of appropriate specialist support services (behavioural
support teams or psychiatric or neurological assessment) and their
availability.
Psychomotor skills
• Demonstrate the skills to conduct a physical and mental state assessment.