The use of psychotropic medication with
ORIGINAL ARTICLE
The use of psychotropic
medication with adults with
learning disabilities: survey
findings and implications for
services
Melanie Chapman, Manchester Learning Disability Partnership, Mauldeth House, Mauldeth Road
West, Manchester M21 7RL, UK; Paul Gledhill, Community Provision, Oakwood Resource Centre,
Manchester Learning Disability Partnership, 177 Longley Lane, Northenden, Manchester M22 4HY, UK;
Phillip Jones, Supported Living Networks, Forrester House Resource Centre, 50 Blackwin Street, West
Gorton, Manchester M12 5JY, UK; Mark Burton, Manchester Learning Disability Partnership,
Mauldeth House, Mauldeth Road West, Manchester M21 7RL, UK and Saroj Soni, Manchester Mental
Health and Social Care Trust, Oakwood Resource Centre, Manchester Learning Disability Partnership,
177 Longley Lane, Northenden, Manchester M22 4HY, UK
Summary
This paper describes the findings of a survey into prescribing of psychotropic
medication with adults with learning disabilities in a British city. A self-completion
questionnaire was sent to staff in dispersed housing and community learning
disability teams to gather information about the number of people prescribed
psychoactive medication, the type of medication prescribed, General Practitioner
and Consultant Psychiatrist visits.
The survey identified 55 people who were prescribed psychotropic medication. Of
these, 89% were prescribed antipsychotic medication, whilst 47% were prescribed
antidepressants. Forty-four per cent were prescribed more than one category of
psychotropic medication, whilst 22% were prescribed more than one antipsychotic
medication. Worryingly, a clear diagnosis was not provided in a large proportion of
cases. The survey has informed a number of service developments, which are briefly
described.
Keywords Community setting, medication reviews, mental health diagnosis, polypharmacy, psychotropic medication, survey
Introduction
There has been much interest in the use of psychotropic
medication with people with learning disabilities (Clarke
et al. 1990; Jenkins 2000). Mental health problems are
reported to be more commonly experienced by people with
learning disabilities (Osman 2000), and the use of psychotropic medication may be useful in the treatment of mental
health problems. However, studies have shown that adults
doi:10.1111/j.1468-3156.2005.00334.x
with learning disabilities may be prescribed psychotropic
medication when they do not have a mental health diagnosis
(Young & Hawkins 2002). Instead psychotropic medication
may be prescribed to control behaviour considered ‘challenging’, contrary to guidelines (Rush & Frances 2000), and
despite very limited evidence for their utility (Brylewski &
Duggan 2004; Didden et al. 1997; Duggan & Brylewski 2004).
For example, Clarke et al. (1990) found that whilst there
were differences in the rate of prescribing of psychotropic
ª 2006 BILD Publications, British Journal of Learning Disabilities, 34, 28–35
The use of psychotropic medication with adults
medication in hospitals, community residential facilities,
and family homes, there were no significant differences in
the reported prevalence of behaviour disorders among the
three populations. Typically, studies indicate prescribing
rates of 35% in hospital settings, with lower rates in
community residential settings, and the lowest rates in
family settings (Clarke et al. 1990).
It is important that the prescribing of psychotropic
medications balances the potential risks and benefits for
individuals and is evidence-based. Psychotropic medication
should not be used as a means of controlling behaviours or
for sedation. Consideration needs to be given to the possible
side-effects of such medication and the impact on an
individual’s quality of life. Side effects can be debilitating
(for example, restlessness, pacing, drowsiness, insomnia,
tardive dyskinesia) and unpleasant (for example, dribbling,
nausea, constipation) (British Medical Association 2001;
Jenkins 2000). There is conflicting evidence as to whether
some people with learning disabilities are at increased risk
of developing short-term and long-term side-effects because
of pre-existing neurological damage (Brylewski & Duggan
2004), whilst Aman (1984) raised concerns regarding the
potential negative impact of antipsychotic medication on
learning and the cognitive abilities of people with learning
disabilities. However, communication barriers and lack of
information may prevent people with learning disabilities
reporting and others recognizing side-effects.
Polypharmacy (the administration of many drugs
together) can exacerbate side-effects, lead to harmful interactions and neuroleptic malignant syndrome (Jenkins 2000).
Of additional concern is evidence that the use of psychotropic medication may lead to increased risk of sudden
cardiac death (Cohen et al. 2001; Frassati et al. 2004; Straus
et al. 2004).
This survey arose from a desire to know more about local
prescribing patterns. Whereas Clarke and colleagues were
able to use a pre-existing register to explore prescribing
patterns, there was a lack of robust systems locally to
facilitate the collation of such information. A range of
practitioners involved in supporting adults with learning
disabilities may have prescribed medication, and there was
a lack of information about the ‘medication history’ of
people who had previously lived in an institutional setting,
or who had recently moved into adult services. Locally, as
nationally, there had been a shortage of Psychiatrists. The
survey followed a 2-year period with only minimal locum
cover, a common situation in learning disability services
throughout the country. Thus there was concern over
whether people had been receiving regular medication
reviews.
As a consequence, in 1999/2000 the service undertook a
survey to gain information about the use of psychotropic
medication with people supported by the service. The
survey was carried out as part of the service’s annual
ª 2006 BILD Publications, British Journal of Learning Disabilities, 34, 28–35
29
programme of setting objectives to improve service effectiveness, and was conducted by a group of community
nurses with support from a researcher (MC) once the study
was underway.
Aims
The survey aimed to collect information about:
• The type of medication taken by people supported by the
service and the reasons people are prescribed medication.
• The extent of polypharmacy.
• How often medication is reviewed.
Method
Members of the group devised a questionnaire requesting
the following information:
• Background details of the learning disabled person (age
and gender).
• Details of the person’s General Practitioner, the most
recent General Practitioner visit, any changes made to
medication and reasons for these changes.
• Details of the person’s psychiatrist, diagnosis, the most
recent visit, any changes to medication and reasons for these
changes.
• Details of current medication, reason for prescribing this
medication, length that medication had been prescribed,
date of last review and next review.
The questionnaire was sent to managers of supported
dispersed housing and community learning disability
teams (CLDTs) to distribute to staff. Because of concerns
about the amount of time it would take to complete
questionnaires staff were asked to complete questionnaires
for up to 10 people with learning disabilities supported by
the service who were prescribed psychotropic medication
and seen by a consultant psychiatrist. Information was
obtained from records held at the person’s home or
information held at the CLDTs. A reminder was sent to
senior managers of the networks and CLDTs. Questionnaires were not sent to independent providers, nor was
information sought from GPs or from records held by
Consultant Psychiatrists at this stage. A sample of
20 returned questionnaires was later compared with a
psychiatrist’s records to evaluate the accuracy of the
information included on the questionnaires.
Information from the questionnaires was entered on an
SPSS database to allow statistical analysis.
Results
The sample
The survey identified 55 people who were prescribed
psychotropic medication. The opportunity sample included
30
M. Chapman et al.
a high (85%) proportion of people living in supported
accommodation. This represented 23% of the service’s
dispersed housing network tenants at the time of the survey.
Sixty-one per cent of the sample were male, whilst
39% were female. The youngest person was 27 years old
and the oldest 72 (mean 47.04, SD 11.00). No data was
provided for five people. Figure 1 demonstrates the age and
gender of the people prescribed psychotropic medication.
Type of medication
Medication was categorized by British National Formulary
(BNF) type (British Medical Association, 2001). Table 1
summarizes the number of people prescribed each type of
medication.
The most commonly prescribed psychotropic medications
were risperidone (n ¼ 14), sertraline (11), thioridazine (9),
chlorpromazine (8), haloperidol (6) and zuclopenthixol (6).
All of these are types of antipsychotic medication, apart
from sertraline which is an antidepressant. In addition,
13 people (23%) were prescribed anti-muscarinic medication
prescribed to reduce parkinsonian side effects of antipsychotic medication.
16
Diagnoses
There were a number of different mental health diagnoses
amongst the group and also a significant number where no
diagnosis was provided. Figure 2 gives the diagnosis (or
nondiagnosis) for people identified by the survey.
A number of differing reasons were provided as to why
medication had been prescribed. The reasons for prescribing
antipsychotic and antidepressant medication are outlined in
Table 2.
Length of time on medication and medication reviews
Thirty-six people prescribed antipsychotic medication had
their medication reviewed in the previous year. One
person’s medication had not been reviewed for 3 years,
whilst it was not possible to identify when the previous
review was for eight people. At least one person had been
prescribed antipsychotic medication for over 10 years; it
was not known or recorded when the medication was first
prescribed for a further 12 people.
One person had been prescribed antidepressant medication for over 5 years and information was not available
about how long the medication had been prescribed for a
further four people. For five people it was not known
when the medication was last reviewed and another
14
6
12
3
Female
70
Male
60
50
10
%
8
40
30
23.6
20
3
10
3.6
1.8
3.6
1.8
1.8
SD
PT
rd
so
d
di
Ep
oo
hi
M
Sc
s/
si
re
er
y
ps
ile
is
em
Au
t
en
en
D
hr
zo
p
m
tia
ia
ty
ie
nx
pr
N
ho
70-79
Ps
60-69
ep
50-59
D
40-49
ot
0
1
30-39
/A
ov
i
4
0
20-29
de
d
6
0
2
5.4
0
yc
10
n
9
4
io
6
ss
N
6
2
58.2
Age
Diagnosis
Figure 2 Diagnosis.
Figure 1 Age of sample.
Table 2 Reason for medication
Table 1 Type of medication
n
Antipsychotics
Antidepressants
Anti-anxiolytics
Antimanics
Antimuscarinics
49
26
5
3
13
Total*
96
*Total is more than 55 as some people were prescribed more than one type
of medication.
Antipsychotics
Antidepressants
n
n
%
Mental health
Behaviour
Mental health & behaviour
Antipsychotic/antidepressant
Other
No reason given
9
18
7
8
3
4
18.4
36.7
14.3
16.3
6.1
8.2
Total
49
100.0
5
6
1
13
1
26.0
%
19.2
23.1
3.8
50.1
3.8
100.0
ª 2006 BILD Publications, British Journal of Learning Disabilities, 34, 28–35
The use of psychotropic medication with adults
person’s medication had not been reviewed for over a
year. None of these six people had a date set to review
their medication.
The extent of polypharmacy
Polypharmacy can be defined as the administration of many
drugs together, or the administration of excessive medication (Miller & Brackman 1987). For the purposes of this
survey two measures of polypharmacy were used:
• When an individual is prescribed more than one type of
medication from the same BNF category (British Medical
Association 2001) [note: PRN (prescribe when necessary)
medication was also included].
• The number of different BNF categories of medication
prescribed to individuals (excluding anticonvulsants and
antimuscarinics).
It is recognized that these are crude measures, and that
more detailed examination would be needed to draw more
reliable conclusions about whether the levels and combinations of medication were appropriate.
Of the 26 people prescribed antidepressant medication
21 people (81%) were also prescribed antipsychotic medication, four (15%) an anti-anxiolytic and two (7%) antimanic
medication.
Twenty-four people (44%) were prescribed medication
from more than one category. Two people were prescribed medication from four of the five different categories, two people from three categories and 20 people
from two categories. Of those 49 people prescribed
antipsychotic medication, 21 (43%) were also prescribed
an antidepressant, five (10%) were prescribed anti-anxiolytics and four (8%) antimanic medication. Twelve people
were prescribed two types of antipsychotic medication;
this represents 25% of people prescribed antipsychotic
medication.
Discussion
This survey has provided information to improve local
service provision, to enable comparisons with other districts, and to add to the existing evidence base on prescribing patterns. Future audits will permit monitoring of
prescribing levels.
Prescribing levels and patterns
The figures are probably an under-representation of the
actual number of people receiving psychoactive medication as surveys rarely achieve 100% response rates and
only people seen by a consultant psychiatrist were
included. Other studies have found that approximately
half of people with learning disability receiving neuroleptic medication and just over one-third of those
ª 2006 BILD Publications, British Journal of Learning Disabilities, 34, 28–35
31
receiving antidepressants are under the review of a
consultant psychiatrist (Emerson et al. 1998). In addition,
independent housing providers were not included in the
survey.
Despite these limitations, the survey demonstrated that at
least 23% of the service’s dispersed housing network tenants
were prescribed psychoactive medication. This is comparable with numbers cited in other community surveys
(Branford 1994; Emerson et al. 1998), although Kiernan et al.
(1995) found 48% of people were prescribed antipsychotic
medication (PRN medication was included).
In common with other studies, these findings may
suggest that prescribing of psychotropic medication is more
common in dispersed housing settings than in family
settings. However, the large proportion of the sample in
dispersed housing is likely to have been caused, at least in
part, by a lower response from CLDT members, and as a
result of information being easier to access for people in
dispersed housing. Moreover, CLDT staff are only in contact
with a proportion of the learning disabled population at any
given time, so are unlikely to be able to identify all people
prescribed psychotropic medication.
The pattern of prescribing contrasts with other studies.
These have shown that thioridazine (Branford 1994; Molyneux et al. 1999) or chlorpromazine (Kiernan et al. 1995)
were most commonly prescribed, and that haloperidol and
zuclopenthixol were also regularly prescribed. None of
these studies highlighted risperidone as being commonly
prescribed, probably because it has only become available
relatively recently. The rates of prescribing of antimuscarinic medication are identical to findings in Leicestershire
(Branford et al. 1995) – this may reflect the incidence of
Parkinsonian side effects.
Polypharmacy
The levels of polypharmacy are also similar to those
found in some other studies; for example 30% in three
areas in the North West (Molyneux et al. 1999). Twentyfour people within our sample (44%) were prescribed
more than one type of medication, compared with 35% in
the Kiernan et al. (1995) study. Twelve people (22%) in
our sample were prescribed more than one of the same
type of neuroleptic; this compares with 23% (Molyneux
et al. 1999), 22% (Kiernan et al. 1995) and 11% (Branford
1994).
However, the levels of polypharmacy are lower than
those found in another recently reported British audit on
antipsychotic medication in three tertiary services for
people with learning disabilities (an assessment and
treatment centre, a medium secure forensic unit and a
specialist unit for people with moderate to severe learning
disabilities and challenging behaviour) (Dalvi et al. 2003).
This may be due to our sampling process leading to an
32
M. Chapman et al.
under-estimate of levels of polypharmacy, national
variations in prescribing patterns, or the community
setting in our study. This indicates the continuing need
to examine prescription patterns in different settings and
to consider the setting where studies have been carried
out. The levels of polypharmacy in these studies are
of concern because of the potential consequences of
polypharmacy.
Diagnosis
It is worrying to note the number of people prescribed
such medication who appear not to have a mental health
diagnosis. This may suggest that a diagnosis has not been
made, documented, or communicated to staff. Alternatively, it may suggest that individuals are being prescribed
psychotic medication to prevent behaviour which challenges (for example, aggression, self-injury, insomnia),
rather than addressing the causes of such behaviour. It
may also reflect a reluctance to label people with a mental
health diagnosis. Another study exploring the reasons why
people with learning disabilities are prescribed psychotropic medication found that whilst 59% of medications
were prescribed to treat the diagnosis for which the
medication was intended, 20% were prescribed for reasons
that did not match the accepted use of the medications
(Young & Hawkins 2002) (see also Emerson et al. 1998).
Whereas it can be difficult to give correct diagnoses of
mental health problems within the field of learning
disabilities (Hogg et al. 1988; Kroese et al. 2001) and the
very validity and reliability of mental health diagnoses has
been challenged (e.g. Bentall 1993), it is worth noting that
there is little evidence to support the long-term management of behaviours which challenge services with psychotropic medication (for example, Branford 1996; Kiernan &
Qureshi 1993). Indeed, it may reduce adaptive behaviour
and interfere with learning (Aman 1984). Even when an
individual does have a mental health diagnosis, medication is not necessarily the treatment of choice, although it
may form part of a broader treatment approach. Whilst the
AAMR Expert Consensus Guidelines state that ‘psychotropic medication use should be based on a psychiatric
diagnosis or specific behavioural-pharmacological hypothesis’ (Guideline 4, Rush & Frances 2000), they also
emphasize the importance of appropriate behavioural and
environmental interventions before the use of psychotropic
medication. Robertson et al. (2003) found that whilst a
large proportion of their sample was on anti-psychotic
medication, few had written behavioural programmes for
reduction of challenging behaviour. Future studies could
usefully include reasons for prescribing medication, whilst
audits should identify whether other interventions have
been tried prior to, or in conjunction with, psychotropic
medication.
Demographics
It may at first be surprising that so few people in the
group between 20 and 29 years of age were prescribed
psychotropic medication as it is a commonly held belief that
the use of psychotropic medication reduces with age (as can
be seen from the other age groups). However, when
interpreting these results it should be remembered that
most of the people in the sample were living in supported
housing networks. People may not come into contact with
such provision until they are older and family support
breaks down. In addition, many people living within the
networks have been resettled from long-stay institutions
where some had spent many years. Thus people in the
networks are older, on average, than in the general
population.
Implications for practice
The importance of regular reviews of psychoactive medication cannot be under-estimated both in terms of people
receiving a correct dosage and the implications of suffering
side effects of medication. The majority of people
prescribed psychotropic medication had medication
reviewed regularly, follow-up appointments were made
with consultants, and information was clearly available
from records kept as to when the medication was
prescribed. This reflects a level of good practice. However,
it is worrying that some of the people known to the service
had not had reviews for over a year, and that for some
people it was not known when the last review was. The
findings from the survey have been shared within the
service. A number of steps have been taken as a result as
described below.
Medication reviews
Twenty people were referred to a learning disability
psychiatrist for a review of medication. Table 3
summarizes the results of these visits. The majority of
Table 3 Results of psychiatrist’s visits
n
Reduce/stop psychoactive medication*
Change medication
No change
Increase psychoactive medication
Alter means of administration (injection, not tablet)
Not seen
8
5
4
1
1
1
20
*Includes reductions in antipsychotics or antidepressants.
From one antipsychotic to another, or from an antidepressant to an
antipsychotic.
ª 2006 BILD Publications, British Journal of Learning Disabilities, 34, 28–35
The use of psychotropic medication with adults
changes were attempts to reduce psychoactive medication,
often with the aim of stopping medication, indicating good
practice. There is only one example of increasing medication
and this followed a failed attempt to alter timing of
medication.
Improving guidelines and information
The survey has shown that information about a person’s
medication and/or diagnosis may not be routinely and
consistently recorded in their records. Guidelines should be
included in a person’s care plan of how to address
behaviours that challenge services, along with information
about the medication a person is prescribed, the reason for
this medication, potential side effects and frequency of
medication reviews.
The need for ongoing audits
Clearly, such surveys can draw attention to the level of
prescribing of psychoactive medication locally, and identify
people whose medication needs to be reviewed. The service
plans to incorporate whether people are receiving medication reviews as part of the regular audits of standards
within dispersed housing. However, this will not ensure
that people living in a family setting, or in independently
provided housing receive regular reviews; recording information about medication reviews in Health Action Plans
would include these people.
Side effects to psychotropic medication are common and
some are long-term (for example, tardive dyskinesia, tardive
akathisia). A number of standard tools to monitor the side
effects of psychotropic medication exist which could be
used by services. These include the Scale for the Assessment
of Negative Symptoms (Andreasen 1989), the Liverpool
University Neuroleptic Side Effects Rating Scale (Day et al.
1995) and the nurse-administered ‘side-effect’ checklist
(Jordan et al. 2002).
Staff training and information provision
During the survey, some support staff expressed a wish
to learn more about medication and their side-effects. It
has been recommended that staff are aware of possible
side-effects of medication to look out for. This could be
done by recording such information as part of individuals’ care plans and/or Health Action Plans. Valuing
People (Department of Health 2001) recommends that
potential side effects are included in Health Action Plans.
As some people are prescribed antimuscarinic medication
to be administered as necessary to counter any sideeffects of other medication, this can be particularly
important. A seminar has been held and further training
sessions are planned for employees, regarding the pre-
ª 2006 BILD Publications, British Journal of Learning Disabilities, 34, 28–35
33
scribing and side-effects of psychotropic medication. The
information needs of informal carers will also need to be
addressed.
Appointments and reviews
Within dispersed housing people are usually supported to
appointments by a support worker. Other studies have
suggested that carers do not always know why antipsychotic medication has been prescribed (Kiernan et al. 1995).
It is essential that those supporting adults with learning
disabilities to appointments have up-to-date knowledge of
the person. This should include changes in behaviour and
mental health since the last review, details of current and
past medication (including how long it has been prescribed)
and whether the person is showing any side effects to the
medication. The objective team recommended that a form be
devised to take to appointments to provide such information. Methods of meeting similar needs by family carers also
require exploring.
Implications for future studies
This study had some methodological limitations which
may have led to some biases and possible under-estimation of the problem of inappropriate medication. However, this reflects some of the difficulties of doing research
in a service setting. The authors believe that the findings
from the study are still useful. It is important that
services are encouraged to carry out studies and report
findings, even if this entails some compromise on scientific standards, in order to scrutinize and improve service
provision and to highlight issues of concern to a wider
audience.
The main stages of the study were carried out before the
appointment of a researcher (MC) to support research
within the service. A number of difficulties in terms of
questionnaire design, sampling and auditing against explicit standards may have been avoided had methodological
advice been sought earlier. It is important that other studies
consider the impact on staff time of participating in research
so that service research is feasible among the many other
demands faced by practitioners.
The study has informed local service provision and
demonstrated that levels of psychotropic medication
may still be unacceptably high within learning disability
services. Taken in the context of other work on this topic
it demonstrates the importance of future studies
considering the impact of setting on prescribing patterns.
It also suggests the need for further investigation of the
reasons people with learning disabilities are prescribed
psychotropic medication, and additional research to
evaluate the effectiveness of alternative treatment
approaches.
34
M. Chapman et al.
Conclusions
This survey drew attention to the number of people with
learning disabilities prescribed psychotropic medication,
despite a body of work suggesting that use of such medication may not always be beneficial. However, the survey also
highlighted areas of good practice, has informed a number of
local service developments, and resulted in reviews for
individuals, which have generally led to steps to reduce
medication. Ongoing audits and monitoring of side effects
will be beneficial, whilst more robust information systems
would facilitate future audits and lead to more accurate
information. There are a number of methodological lessons
from this study that could inform future audits and research.
Acknowledgements
Thanks to the MLDP staff who were members of the
objective group at various times. In particular, thanks are
due to Hamish Kemp, Michael Hughes and Lisa Jones for
their roles in literature searching, survey planning and
administration, and data entry. The authors would also like
to thank all those who took the time to complete questionnaires, and to Anne Francis for collating information about
the medication reviews from records.
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disorders in children and adolescents. In: Greenhill L., editor.
Learning disabilities: implications for psychiatric treatment. Review of
psychiatry series, 19: 5.
Robertson J., Emerson E., Pinkney L., Hatton C., Caesar E. et al.
(2003) Quality and costs of community-based residential supports
for people with learning disabilities and challenging behaviour:
summary. Clin Psychol People with Learn Disabil, 1: 5–7.
ª 2006 BILD Publications, British Journal of Learning Disabilities, 34, 28–35
The use of psychotropic medication with adults
Rush A.J. & Frances A. (2000) Expert consensus guideline series:
treatment of psychiatric and behavioral problems in mental
retardation. Am J Ment Retard, 105: 159–228.
Straus S.M.J.M., Bleumink G.S., Dieleman J.P., van der Lei J., ’t Jong
G.W., et al. (2004) Antipsychotics and the risk of sudden cardiac
death. Arch Intern Med, 164: 1293–7.
ª 2006 BILD Publications, British Journal of Learning Disabilities, 34, 28–35
35
Young A.T. & Hawkins J. (2002) Psychotropic medication prescriptions: an analysis of the reasons people with mental
retardation are prescribed psychotropic medication. J Dev Physical
Disabil, 14: 129–42.
The use of psychotropic
medication with adults with
learning disabilities: survey
findings and implications for
services
Melanie Chapman, Manchester Learning Disability Partnership, Mauldeth House, Mauldeth Road
West, Manchester M21 7RL, UK; Paul Gledhill, Community Provision, Oakwood Resource Centre,
Manchester Learning Disability Partnership, 177 Longley Lane, Northenden, Manchester M22 4HY, UK;
Phillip Jones, Supported Living Networks, Forrester House Resource Centre, 50 Blackwin Street, West
Gorton, Manchester M12 5JY, UK; Mark Burton, Manchester Learning Disability Partnership,
Mauldeth House, Mauldeth Road West, Manchester M21 7RL, UK and Saroj Soni, Manchester Mental
Health and Social Care Trust, Oakwood Resource Centre, Manchester Learning Disability Partnership,
177 Longley Lane, Northenden, Manchester M22 4HY, UK
Summary
This paper describes the findings of a survey into prescribing of psychotropic
medication with adults with learning disabilities in a British city. A self-completion
questionnaire was sent to staff in dispersed housing and community learning
disability teams to gather information about the number of people prescribed
psychoactive medication, the type of medication prescribed, General Practitioner
and Consultant Psychiatrist visits.
The survey identified 55 people who were prescribed psychotropic medication. Of
these, 89% were prescribed antipsychotic medication, whilst 47% were prescribed
antidepressants. Forty-four per cent were prescribed more than one category of
psychotropic medication, whilst 22% were prescribed more than one antipsychotic
medication. Worryingly, a clear diagnosis was not provided in a large proportion of
cases. The survey has informed a number of service developments, which are briefly
described.
Keywords Community setting, medication reviews, mental health diagnosis, polypharmacy, psychotropic medication, survey
Introduction
There has been much interest in the use of psychotropic
medication with people with learning disabilities (Clarke
et al. 1990; Jenkins 2000). Mental health problems are
reported to be more commonly experienced by people with
learning disabilities (Osman 2000), and the use of psychotropic medication may be useful in the treatment of mental
health problems. However, studies have shown that adults
doi:10.1111/j.1468-3156.2005.00334.x
with learning disabilities may be prescribed psychotropic
medication when they do not have a mental health diagnosis
(Young & Hawkins 2002). Instead psychotropic medication
may be prescribed to control behaviour considered ‘challenging’, contrary to guidelines (Rush & Frances 2000), and
despite very limited evidence for their utility (Brylewski &
Duggan 2004; Didden et al. 1997; Duggan & Brylewski 2004).
For example, Clarke et al. (1990) found that whilst there
were differences in the rate of prescribing of psychotropic
ª 2006 BILD Publications, British Journal of Learning Disabilities, 34, 28–35
The use of psychotropic medication with adults
medication in hospitals, community residential facilities,
and family homes, there were no significant differences in
the reported prevalence of behaviour disorders among the
three populations. Typically, studies indicate prescribing
rates of 35% in hospital settings, with lower rates in
community residential settings, and the lowest rates in
family settings (Clarke et al. 1990).
It is important that the prescribing of psychotropic
medications balances the potential risks and benefits for
individuals and is evidence-based. Psychotropic medication
should not be used as a means of controlling behaviours or
for sedation. Consideration needs to be given to the possible
side-effects of such medication and the impact on an
individual’s quality of life. Side effects can be debilitating
(for example, restlessness, pacing, drowsiness, insomnia,
tardive dyskinesia) and unpleasant (for example, dribbling,
nausea, constipation) (British Medical Association 2001;
Jenkins 2000). There is conflicting evidence as to whether
some people with learning disabilities are at increased risk
of developing short-term and long-term side-effects because
of pre-existing neurological damage (Brylewski & Duggan
2004), whilst Aman (1984) raised concerns regarding the
potential negative impact of antipsychotic medication on
learning and the cognitive abilities of people with learning
disabilities. However, communication barriers and lack of
information may prevent people with learning disabilities
reporting and others recognizing side-effects.
Polypharmacy (the administration of many drugs
together) can exacerbate side-effects, lead to harmful interactions and neuroleptic malignant syndrome (Jenkins 2000).
Of additional concern is evidence that the use of psychotropic medication may lead to increased risk of sudden
cardiac death (Cohen et al. 2001; Frassati et al. 2004; Straus
et al. 2004).
This survey arose from a desire to know more about local
prescribing patterns. Whereas Clarke and colleagues were
able to use a pre-existing register to explore prescribing
patterns, there was a lack of robust systems locally to
facilitate the collation of such information. A range of
practitioners involved in supporting adults with learning
disabilities may have prescribed medication, and there was
a lack of information about the ‘medication history’ of
people who had previously lived in an institutional setting,
or who had recently moved into adult services. Locally, as
nationally, there had been a shortage of Psychiatrists. The
survey followed a 2-year period with only minimal locum
cover, a common situation in learning disability services
throughout the country. Thus there was concern over
whether people had been receiving regular medication
reviews.
As a consequence, in 1999/2000 the service undertook a
survey to gain information about the use of psychotropic
medication with people supported by the service. The
survey was carried out as part of the service’s annual
ª 2006 BILD Publications, British Journal of Learning Disabilities, 34, 28–35
29
programme of setting objectives to improve service effectiveness, and was conducted by a group of community
nurses with support from a researcher (MC) once the study
was underway.
Aims
The survey aimed to collect information about:
• The type of medication taken by people supported by the
service and the reasons people are prescribed medication.
• The extent of polypharmacy.
• How often medication is reviewed.
Method
Members of the group devised a questionnaire requesting
the following information:
• Background details of the learning disabled person (age
and gender).
• Details of the person’s General Practitioner, the most
recent General Practitioner visit, any changes made to
medication and reasons for these changes.
• Details of the person’s psychiatrist, diagnosis, the most
recent visit, any changes to medication and reasons for these
changes.
• Details of current medication, reason for prescribing this
medication, length that medication had been prescribed,
date of last review and next review.
The questionnaire was sent to managers of supported
dispersed housing and community learning disability
teams (CLDTs) to distribute to staff. Because of concerns
about the amount of time it would take to complete
questionnaires staff were asked to complete questionnaires
for up to 10 people with learning disabilities supported by
the service who were prescribed psychotropic medication
and seen by a consultant psychiatrist. Information was
obtained from records held at the person’s home or
information held at the CLDTs. A reminder was sent to
senior managers of the networks and CLDTs. Questionnaires were not sent to independent providers, nor was
information sought from GPs or from records held by
Consultant Psychiatrists at this stage. A sample of
20 returned questionnaires was later compared with a
psychiatrist’s records to evaluate the accuracy of the
information included on the questionnaires.
Information from the questionnaires was entered on an
SPSS database to allow statistical analysis.
Results
The sample
The survey identified 55 people who were prescribed
psychotropic medication. The opportunity sample included
30
M. Chapman et al.
a high (85%) proportion of people living in supported
accommodation. This represented 23% of the service’s
dispersed housing network tenants at the time of the survey.
Sixty-one per cent of the sample were male, whilst
39% were female. The youngest person was 27 years old
and the oldest 72 (mean 47.04, SD 11.00). No data was
provided for five people. Figure 1 demonstrates the age and
gender of the people prescribed psychotropic medication.
Type of medication
Medication was categorized by British National Formulary
(BNF) type (British Medical Association, 2001). Table 1
summarizes the number of people prescribed each type of
medication.
The most commonly prescribed psychotropic medications
were risperidone (n ¼ 14), sertraline (11), thioridazine (9),
chlorpromazine (8), haloperidol (6) and zuclopenthixol (6).
All of these are types of antipsychotic medication, apart
from sertraline which is an antidepressant. In addition,
13 people (23%) were prescribed anti-muscarinic medication
prescribed to reduce parkinsonian side effects of antipsychotic medication.
16
Diagnoses
There were a number of different mental health diagnoses
amongst the group and also a significant number where no
diagnosis was provided. Figure 2 gives the diagnosis (or
nondiagnosis) for people identified by the survey.
A number of differing reasons were provided as to why
medication had been prescribed. The reasons for prescribing
antipsychotic and antidepressant medication are outlined in
Table 2.
Length of time on medication and medication reviews
Thirty-six people prescribed antipsychotic medication had
their medication reviewed in the previous year. One
person’s medication had not been reviewed for 3 years,
whilst it was not possible to identify when the previous
review was for eight people. At least one person had been
prescribed antipsychotic medication for over 10 years; it
was not known or recorded when the medication was first
prescribed for a further 12 people.
One person had been prescribed antidepressant medication for over 5 years and information was not available
about how long the medication had been prescribed for a
further four people. For five people it was not known
when the medication was last reviewed and another
14
6
12
3
Female
70
Male
60
50
10
%
8
40
30
23.6
20
3
10
3.6
1.8
3.6
1.8
1.8
SD
PT
rd
so
d
di
Ep
oo
hi
M
Sc
s/
si
re
er
y
ps
ile
is
em
Au
t
en
en
D
hr
zo
p
m
tia
ia
ty
ie
nx
pr
N
ho
70-79
Ps
60-69
ep
50-59
D
40-49
ot
0
1
30-39
/A
ov
i
4
0
20-29
de
d
6
0
2
5.4
0
yc
10
n
9
4
io
6
ss
N
6
2
58.2
Age
Diagnosis
Figure 2 Diagnosis.
Figure 1 Age of sample.
Table 2 Reason for medication
Table 1 Type of medication
n
Antipsychotics
Antidepressants
Anti-anxiolytics
Antimanics
Antimuscarinics
49
26
5
3
13
Total*
96
*Total is more than 55 as some people were prescribed more than one type
of medication.
Antipsychotics
Antidepressants
n
n
%
Mental health
Behaviour
Mental health & behaviour
Antipsychotic/antidepressant
Other
No reason given
9
18
7
8
3
4
18.4
36.7
14.3
16.3
6.1
8.2
Total
49
100.0
5
6
1
13
1
26.0
%
19.2
23.1
3.8
50.1
3.8
100.0
ª 2006 BILD Publications, British Journal of Learning Disabilities, 34, 28–35
The use of psychotropic medication with adults
person’s medication had not been reviewed for over a
year. None of these six people had a date set to review
their medication.
The extent of polypharmacy
Polypharmacy can be defined as the administration of many
drugs together, or the administration of excessive medication (Miller & Brackman 1987). For the purposes of this
survey two measures of polypharmacy were used:
• When an individual is prescribed more than one type of
medication from the same BNF category (British Medical
Association 2001) [note: PRN (prescribe when necessary)
medication was also included].
• The number of different BNF categories of medication
prescribed to individuals (excluding anticonvulsants and
antimuscarinics).
It is recognized that these are crude measures, and that
more detailed examination would be needed to draw more
reliable conclusions about whether the levels and combinations of medication were appropriate.
Of the 26 people prescribed antidepressant medication
21 people (81%) were also prescribed antipsychotic medication, four (15%) an anti-anxiolytic and two (7%) antimanic
medication.
Twenty-four people (44%) were prescribed medication
from more than one category. Two people were prescribed medication from four of the five different categories, two people from three categories and 20 people
from two categories. Of those 49 people prescribed
antipsychotic medication, 21 (43%) were also prescribed
an antidepressant, five (10%) were prescribed anti-anxiolytics and four (8%) antimanic medication. Twelve people
were prescribed two types of antipsychotic medication;
this represents 25% of people prescribed antipsychotic
medication.
Discussion
This survey has provided information to improve local
service provision, to enable comparisons with other districts, and to add to the existing evidence base on prescribing patterns. Future audits will permit monitoring of
prescribing levels.
Prescribing levels and patterns
The figures are probably an under-representation of the
actual number of people receiving psychoactive medication as surveys rarely achieve 100% response rates and
only people seen by a consultant psychiatrist were
included. Other studies have found that approximately
half of people with learning disability receiving neuroleptic medication and just over one-third of those
ª 2006 BILD Publications, British Journal of Learning Disabilities, 34, 28–35
31
receiving antidepressants are under the review of a
consultant psychiatrist (Emerson et al. 1998). In addition,
independent housing providers were not included in the
survey.
Despite these limitations, the survey demonstrated that at
least 23% of the service’s dispersed housing network tenants
were prescribed psychoactive medication. This is comparable with numbers cited in other community surveys
(Branford 1994; Emerson et al. 1998), although Kiernan et al.
(1995) found 48% of people were prescribed antipsychotic
medication (PRN medication was included).
In common with other studies, these findings may
suggest that prescribing of psychotropic medication is more
common in dispersed housing settings than in family
settings. However, the large proportion of the sample in
dispersed housing is likely to have been caused, at least in
part, by a lower response from CLDT members, and as a
result of information being easier to access for people in
dispersed housing. Moreover, CLDT staff are only in contact
with a proportion of the learning disabled population at any
given time, so are unlikely to be able to identify all people
prescribed psychotropic medication.
The pattern of prescribing contrasts with other studies.
These have shown that thioridazine (Branford 1994; Molyneux et al. 1999) or chlorpromazine (Kiernan et al. 1995)
were most commonly prescribed, and that haloperidol and
zuclopenthixol were also regularly prescribed. None of
these studies highlighted risperidone as being commonly
prescribed, probably because it has only become available
relatively recently. The rates of prescribing of antimuscarinic medication are identical to findings in Leicestershire
(Branford et al. 1995) – this may reflect the incidence of
Parkinsonian side effects.
Polypharmacy
The levels of polypharmacy are also similar to those
found in some other studies; for example 30% in three
areas in the North West (Molyneux et al. 1999). Twentyfour people within our sample (44%) were prescribed
more than one type of medication, compared with 35% in
the Kiernan et al. (1995) study. Twelve people (22%) in
our sample were prescribed more than one of the same
type of neuroleptic; this compares with 23% (Molyneux
et al. 1999), 22% (Kiernan et al. 1995) and 11% (Branford
1994).
However, the levels of polypharmacy are lower than
those found in another recently reported British audit on
antipsychotic medication in three tertiary services for
people with learning disabilities (an assessment and
treatment centre, a medium secure forensic unit and a
specialist unit for people with moderate to severe learning
disabilities and challenging behaviour) (Dalvi et al. 2003).
This may be due to our sampling process leading to an
32
M. Chapman et al.
under-estimate of levels of polypharmacy, national
variations in prescribing patterns, or the community
setting in our study. This indicates the continuing need
to examine prescription patterns in different settings and
to consider the setting where studies have been carried
out. The levels of polypharmacy in these studies are
of concern because of the potential consequences of
polypharmacy.
Diagnosis
It is worrying to note the number of people prescribed
such medication who appear not to have a mental health
diagnosis. This may suggest that a diagnosis has not been
made, documented, or communicated to staff. Alternatively, it may suggest that individuals are being prescribed
psychotic medication to prevent behaviour which challenges (for example, aggression, self-injury, insomnia),
rather than addressing the causes of such behaviour. It
may also reflect a reluctance to label people with a mental
health diagnosis. Another study exploring the reasons why
people with learning disabilities are prescribed psychotropic medication found that whilst 59% of medications
were prescribed to treat the diagnosis for which the
medication was intended, 20% were prescribed for reasons
that did not match the accepted use of the medications
(Young & Hawkins 2002) (see also Emerson et al. 1998).
Whereas it can be difficult to give correct diagnoses of
mental health problems within the field of learning
disabilities (Hogg et al. 1988; Kroese et al. 2001) and the
very validity and reliability of mental health diagnoses has
been challenged (e.g. Bentall 1993), it is worth noting that
there is little evidence to support the long-term management of behaviours which challenge services with psychotropic medication (for example, Branford 1996; Kiernan &
Qureshi 1993). Indeed, it may reduce adaptive behaviour
and interfere with learning (Aman 1984). Even when an
individual does have a mental health diagnosis, medication is not necessarily the treatment of choice, although it
may form part of a broader treatment approach. Whilst the
AAMR Expert Consensus Guidelines state that ‘psychotropic medication use should be based on a psychiatric
diagnosis or specific behavioural-pharmacological hypothesis’ (Guideline 4, Rush & Frances 2000), they also
emphasize the importance of appropriate behavioural and
environmental interventions before the use of psychotropic
medication. Robertson et al. (2003) found that whilst a
large proportion of their sample was on anti-psychotic
medication, few had written behavioural programmes for
reduction of challenging behaviour. Future studies could
usefully include reasons for prescribing medication, whilst
audits should identify whether other interventions have
been tried prior to, or in conjunction with, psychotropic
medication.
Demographics
It may at first be surprising that so few people in the
group between 20 and 29 years of age were prescribed
psychotropic medication as it is a commonly held belief that
the use of psychotropic medication reduces with age (as can
be seen from the other age groups). However, when
interpreting these results it should be remembered that
most of the people in the sample were living in supported
housing networks. People may not come into contact with
such provision until they are older and family support
breaks down. In addition, many people living within the
networks have been resettled from long-stay institutions
where some had spent many years. Thus people in the
networks are older, on average, than in the general
population.
Implications for practice
The importance of regular reviews of psychoactive medication cannot be under-estimated both in terms of people
receiving a correct dosage and the implications of suffering
side effects of medication. The majority of people
prescribed psychotropic medication had medication
reviewed regularly, follow-up appointments were made
with consultants, and information was clearly available
from records kept as to when the medication was
prescribed. This reflects a level of good practice. However,
it is worrying that some of the people known to the service
had not had reviews for over a year, and that for some
people it was not known when the last review was. The
findings from the survey have been shared within the
service. A number of steps have been taken as a result as
described below.
Medication reviews
Twenty people were referred to a learning disability
psychiatrist for a review of medication. Table 3
summarizes the results of these visits. The majority of
Table 3 Results of psychiatrist’s visits
n
Reduce/stop psychoactive medication*
Change medication
No change
Increase psychoactive medication
Alter means of administration (injection, not tablet)
Not seen
8
5
4
1
1
1
20
*Includes reductions in antipsychotics or antidepressants.
From one antipsychotic to another, or from an antidepressant to an
antipsychotic.
ª 2006 BILD Publications, British Journal of Learning Disabilities, 34, 28–35
The use of psychotropic medication with adults
changes were attempts to reduce psychoactive medication,
often with the aim of stopping medication, indicating good
practice. There is only one example of increasing medication
and this followed a failed attempt to alter timing of
medication.
Improving guidelines and information
The survey has shown that information about a person’s
medication and/or diagnosis may not be routinely and
consistently recorded in their records. Guidelines should be
included in a person’s care plan of how to address
behaviours that challenge services, along with information
about the medication a person is prescribed, the reason for
this medication, potential side effects and frequency of
medication reviews.
The need for ongoing audits
Clearly, such surveys can draw attention to the level of
prescribing of psychoactive medication locally, and identify
people whose medication needs to be reviewed. The service
plans to incorporate whether people are receiving medication reviews as part of the regular audits of standards
within dispersed housing. However, this will not ensure
that people living in a family setting, or in independently
provided housing receive regular reviews; recording information about medication reviews in Health Action Plans
would include these people.
Side effects to psychotropic medication are common and
some are long-term (for example, tardive dyskinesia, tardive
akathisia). A number of standard tools to monitor the side
effects of psychotropic medication exist which could be
used by services. These include the Scale for the Assessment
of Negative Symptoms (Andreasen 1989), the Liverpool
University Neuroleptic Side Effects Rating Scale (Day et al.
1995) and the nurse-administered ‘side-effect’ checklist
(Jordan et al. 2002).
Staff training and information provision
During the survey, some support staff expressed a wish
to learn more about medication and their side-effects. It
has been recommended that staff are aware of possible
side-effects of medication to look out for. This could be
done by recording such information as part of individuals’ care plans and/or Health Action Plans. Valuing
People (Department of Health 2001) recommends that
potential side effects are included in Health Action Plans.
As some people are prescribed antimuscarinic medication
to be administered as necessary to counter any sideeffects of other medication, this can be particularly
important. A seminar has been held and further training
sessions are planned for employees, regarding the pre-
ª 2006 BILD Publications, British Journal of Learning Disabilities, 34, 28–35
33
scribing and side-effects of psychotropic medication. The
information needs of informal carers will also need to be
addressed.
Appointments and reviews
Within dispersed housing people are usually supported to
appointments by a support worker. Other studies have
suggested that carers do not always know why antipsychotic medication has been prescribed (Kiernan et al. 1995).
It is essential that those supporting adults with learning
disabilities to appointments have up-to-date knowledge of
the person. This should include changes in behaviour and
mental health since the last review, details of current and
past medication (including how long it has been prescribed)
and whether the person is showing any side effects to the
medication. The objective team recommended that a form be
devised to take to appointments to provide such information. Methods of meeting similar needs by family carers also
require exploring.
Implications for future studies
This study had some methodological limitations which
may have led to some biases and possible under-estimation of the problem of inappropriate medication. However, this reflects some of the difficulties of doing research
in a service setting. The authors believe that the findings
from the study are still useful. It is important that
services are encouraged to carry out studies and report
findings, even if this entails some compromise on scientific standards, in order to scrutinize and improve service
provision and to highlight issues of concern to a wider
audience.
The main stages of the study were carried out before the
appointment of a researcher (MC) to support research
within the service. A number of difficulties in terms of
questionnaire design, sampling and auditing against explicit standards may have been avoided had methodological
advice been sought earlier. It is important that other studies
consider the impact on staff time of participating in research
so that service research is feasible among the many other
demands faced by practitioners.
The study has informed local service provision and
demonstrated that levels of psychotropic medication
may still be unacceptably high within learning disability
services. Taken in the context of other work on this topic
it demonstrates the importance of future studies
considering the impact of setting on prescribing patterns.
It also suggests the need for further investigation of the
reasons people with learning disabilities are prescribed
psychotropic medication, and additional research to
evaluate the effectiveness of alternative treatment
approaches.
34
M. Chapman et al.
Conclusions
This survey drew attention to the number of people with
learning disabilities prescribed psychotropic medication,
despite a body of work suggesting that use of such medication may not always be beneficial. However, the survey also
highlighted areas of good practice, has informed a number of
local service developments, and resulted in reviews for
individuals, which have generally led to steps to reduce
medication. Ongoing audits and monitoring of side effects
will be beneficial, whilst more robust information systems
would facilitate future audits and lead to more accurate
information. There are a number of methodological lessons
from this study that could inform future audits and research.
Acknowledgements
Thanks to the MLDP staff who were members of the
objective group at various times. In particular, thanks are
due to Hamish Kemp, Michael Hughes and Lisa Jones for
their roles in literature searching, survey planning and
administration, and data entry. The authors would also like
to thank all those who took the time to complete questionnaires, and to Anne Francis for collating information about
the medication reviews from records.
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