J R Soc Med 2001;94:333-336
© 2001 Royal Society of Medicine
Essential healthcare for people with learning disabilities: barriers and opportunities
J Hogg BA PhD
White Top Research Unit, Frankland Building, University of Dundee, Dundee
DD1 4HN, Scotland, UK
E-mail@
j.h.hogg{at}dundee.ac.uk
 |
INTRODUCTION
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The past 30 years have seen far-reaching and radical changes
in our
attitude towards people with learning disabilities and
in the values that
inform and guide the development of services
for them and their carers. A
growing emphasis on the provision
of services in the community has led to the
closure of long-stay
hospitals and greater inclusion in the wider society.
Successive
governments have set out to create the conditions under which
community
care may be successfully developed. The delivery of health services
as
an essential part of community care has been placed firmly within
this
framework, as shown in the extension of the
Health of the Nation
strategy to people with learning
disabilities
1.
Elsewhere,
a comprehensive consensus statement on the development of a
responsive
framework for the healthcare of people with learning disabilities
has
been
provided
2.
As the Department of Health
acknowledges3,
however, ‘Significant problems were reported in the re-shaping and
development of appropriate and accessible primary, specialist and continuing
health care services, especially for people with complex or additional
physical or mental health care needs’. This conclusion is confirmed in
many statements from people with learning disabilities and their
carers4. This paper
is concerned with the reasons why access to and quality of primary healthcare
services have posed such problems, with a focus on the role of the general
practitioner (GP).
|
THE ROLE OF PRIMARY HEALTH SERVICES
|
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The right of people with learning disabilities to use community
and
hospital health services, and the central role of GPs in
providing for their
healthcare, are rarely in
dispute
2. Certainly
the
GP is the health professional most frequently contacted by them
and their
carers
5. Most
consultations take place in the
surgery
6,
and GP
opinion is divided on whether people with learning disabilities
require more
home visits than does the general
population
7.
Consultation
rates are lower than those of the general
population
4, though
higher
rates of consultation with specialists have been reported.
Typically, GPs do see themselves as the most appropriate people to provide
healthcare for people with learning
disabilities7,8,9,10.
However, a minority of GPs view them as an unwelcome
burden7, requiring
additional funding if such objections are to be overcome.
|
WHAT GOES WRONG?
|
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Direct assessments of health have also indicated unmet health
needs unknown
to GPs
11, while
healthcare decisionmaking can
be disturbingly
poor
12. Barriers to
delivery of a good service
include communication difficulties and the effect
of challenging
behaviour during consultations, coupled with lack of adequate
consultation
time
13,14.
Selfreferral
is rare, again in part because of communication difficulties
but
also because carers do not identify healthcare needs. Agencies
that commission
social care should ensure that the physical
care of service users gets high
priority both in the training
of care staff and in the relevant review
processes. Another
frequently cited barrier is the GP's lack of knowledge of
health
needs and diagnostic procedures relating to people with learning
disabilities.
Many practices lack information on who has learning disabilities
and
their health status. There exist models of good practice to
improve the
quality of healthcare
decisions
12.
|
IMPROVING PRIMARY CARE SERVICES
|
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Members of the primary healthcare team need to be aware of any
communication
difficulties the person may have, and effective communication
may
require the help of a family carer, a member of professional
staff or a
citizen advocate. GPs can obtain information on best
practice for interviewing
people with learning
disabilities
15.
In
addition, some learning-disabled individuals may need to
be prepared for the
consultation by progressive familiarization
with the setting and the removal
of cues associated with previous
negative experiences.
Issues of informed consent remain problematical while legislation is
pending. The aim, however, must be to avoid inappropriate discussion and/or
coercion before or after an examination. Not infrequently carers are asked to
consent to treatment on behalf of a person with learning disabilities; this
cannot be done within the law.
Might systematic surveys of health identify unrecognized illness and ensure
that the person is participating in appropriate health promotion
initiatives16,17?
Screening of this kind has revealed substantial numbers of unidentified
conditions, and in one study subsequent gains in physical, though not mental,
health were
reported16. Only a
minority of GPs seem willing to undertake screening at
present7,8,
whether they would undertake the task themselves or delegate it to other
members of the practice. For such checks to be accepted by GPs, there is a
need for good quality evidence of their clinical effectiveness—and
possibly appropriate remuneration. In future we might expect general health
checks and screening programmes to be complemented by more specific medical
surveillance for given conditions such as Down
syndrome18.
Screening and health checks for those with learning disability should not
be seen as a substitute for generic screening programmes, especially in women,
whose uptake of breast and cervical cancer screening is inadequate. Most GPs
support equity of access to these services, but there is a lack of clarity
about the circumstances in which they should be offered or pursued. A
publication from the NHS cancer screening programmes is an important step
forward19.
Matters would be further improved if people with learning disabilities had
access to better healthcare information. This would help them to identify and
report their own symptoms. Educational initiatives are increasing and there is
a growing body of published material on healthcare issues designed to be
accessible to people with learning disabilities. At a local level such
material is most likely to be provided by specialist services working in
conjunction with health education agencies. Not all GPs regard health
promotion as part of their
responsibilities7.
There is also an important role for specialist
provision7, but
contact between GPs and specialist learning disability teams is at a low
level. Contact can be strengthened by link worker schemes operating between
teams and primary
care7.
|
MEDICAL EDUCATION AND KNOWLEDGE OF LEARNING DISABILITY
|
|---|
Undergraduate education
Although ‘handicap, disability and rehabilitation’
has been
identified as one of eight important themes in the
core
curriculum
20 the
subject of learning disability receives
only cursory treatment in initial
medical training, postgraduate
studies or continuing medical education. GPs
themselves indicate
that they gained little from undergraduate training on
learning
disability and are conscious of their lack of expertise in this
area
9.
Nevertheless,
a majority of GPs in a recent
survey
7 thought
further
training unnecessary in view of the small number of people with
learning
disabilities they saw. In fact, the average single practice
will have
150 people with such disabilities, of whom 30 have
severe or profound learning
disabilities. With respect to undergraduate
medical education, a 1987 survey
of all medical
schools
21 indicated
an
average time of 11 hours throughout the course, with two deans
saying that
learning disability was not part of the core curriculum.
Those who taught on
learning disability saw their principal
goal as to provide medical students
with the knowledge, understanding
and experience that would enable them to
provide appropriate
treatment whatever their eventual specialty. We lack
information
on how far matters have changed in the subsequent 14
years—or
indeed on whether courses with specific aims related to
learning
disability produce more effective doctors. At St George's Hospital
Medical
School an innovative approach includes considerable input from
people
with learning
disabilities
22.
Family carers ought to
be more involved in medical education, with their
unique and
intimate insights. What sort of support and training do they
require
if they are to contribute in this way?
An excellent framework has been
published23,
including a list of subjects which can be illustrated with examples from
disability and rehabilitation grouped under the topics of ethics and rights,
basic science, clinical science, social science and management of services.
The British Society for Rehabilitation Medicine in 1996 published suggestions
for the content of a core curriculum on disability in
general24.
Continuing medical education
Continuing medical education (CME) for GPs has fared equally poorly. A
recent paper reviewed 36 studies assessing GPs' educational needs, none of
which were related to learning
disability25.
Similarly, the introduction of the postgraduate education allowance, for GPs
meeting specified targets with respect to CME, had little impact on
initiatives concerned with learning disability, while Health of the
Nation priorities, though relevant to people with learning disabilities,
have little bearing on education about learning disability.
Clearly the Chief Medical Officer's proposal to replace the postgraduate
education allowance by practice professional development plans and personal
learning portfolios will radically alter the potential routes through which
doctors will gain information on learning disability. Though such approaches
may offer more effective ways of ensuring continuing education, their link to
target areas may still further reduce CME related to learning disability.
The present aim, therefore, should be to ensure that GPs have a wide range
of information sources on learning disabilities. These include specialist
internet databases, provision of information by specialist voluntary
organizations, and national availability of speaker panels. Directories such
as the Contact a Family Directory and In Touch provide links
to a wealth of specialist groups. Articles in GP magazines, in retainable
format with an index, would provide a further accessible resource.
There is a real need, however, to go beyond the provision of information.
Consideration should be given to the development of a distance-based learning
package, with postgraduate accreditation for GPs. There is also scope to
develop a learning disability training pack which could be used for medical
undergraduate and postgraduate training, and also for multidisciplinary team
training in primary care. Such a pack could include techniques of role play,
with an emphasis on communication
skills26,27.
|
THE WIDER CONTEXT FOR CHANGE
|
|---|
Strategies to increase the emphasis on learning disability in
CME need to
be placed in a wider NHS framework applicable to
education and training. Ten
core principals have been proposed
(originally drafted by the Directorate of
Education and Training,
North Thames Regional Office, 1996). These assert that
education
and training should fulfil a wide range of functions related
to the
service and its interface with research and development,
as well as
encouraging partnerships and cross-boundary working
between academic,
professional and statutory bodies, and innovative
practice in the NHS. Such
principles will clearly have to be
implemented at several levels if they are
to improve effective
education and training in the primary care sector, and
key areas
have been
identified
28.
The question of inadequate health services for people with learning
disabilities, however, goes beyond these NHS-related issues. Of central
concern are workforce planning and the integration of professional support for
these individuals and their carers. Social services and health services
operate with very different types of skill mix, management systems and value
bases29. Joint
community care planning has not necessarily brought planning and delivery of
services into a coherent framework, and joint management of learning
disability services is now being undertaken in certain regions.
A further element of the partnership also needs to be developed by both NHS
and social service staff, i.e. that with users of the services and their
family and professional carers. Carers in particular are a key factor in
linking primary care to the needs of the individual. GPs have drawn attention
to the importance of carers in determining demand for a
service7.
|
CONCLUSION
|
|---|
The publications reviewed in this paper suggest the need for
a coherent
strategy at local and national levels that embraces:
(i) health education and
information for people with learning
disabilities and their carers; (ii)
improved health surveillance
and monitoring; (iii) higher quality education
and innovative
training opportunities at all stages of medical training and
practice;
and (iv) a clear vision as to how the wider policy and strategic
aims
of the NHS will allow people with learning disabilities to benefit
more
from mainstream healthcare services.
|
Acknowledgments
|
|---|
This paper was developed from the proceedings of a meeting on
Essential
Healthcare for People with Learning Disabilities,
held jointly in December
1999 by the RSM and Mencap. I thank
the following for their collaboration: C
Cullen, Psychological
& Behavioural Service, North Staffordshire Combined
Healthcare
NHS Trust; J Dennis, Oxford; C Espie, Department of Psychological
Medicine,
Gartnavel Royal Hospital; S Hollins, Department of Psychiatry
of
Disability, St George's Hospital Medical School; N Jackson,
Thames
Postgraduate Medical and Dental Education, University
of London; G Jones,
Welsh Centre for Learning Disabilities;
B McGinnis, Mencap; J Nicholls,
Hockley; L O'Byrne, East Berkshire
NHS Trust for People with Learning
Disabilities; L Page, Mencap,
London; O Russell, Norah Fry Research Centre,
Bristol; J Wilson,
Independent Learning Disability Consultant, London. Mencap
City
Foundation's generous support in preparation of this work and
a more
comprehensive
review
30 is
gratefully acknowledged.
|
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INTRODUCTION
THE ROLE OF PRIMARY...
