Article on prescribing in Learning Disability - The Knowledge Network

Prescribing in practice
SPL
Recommended prescribing for
people with learning disabilities
Neill Simpson MSc, PhD, FRCPsych and James Douglas MD, FRCGP, FRCPE, DOccMed
People with learning disability
can suffer from the full
range of medical problems
but may have difficulty communicating
their experience.
The authors give advice on
diagnosis, responsibility for
medicine taking, obtaining
consent and ensuring that
the medication is taken as
intended.
Figure 1. People with learning disabilities can have complex health needs, and
difficulties can arise when there are too many diagnoses
Prescribing for patients with
learning disabilities is, in principle,
the same as for everyone of similar
age. In practice, however,
treating people whose developmental
disabilities impair comprehension
and communication requires
skills that prescribers should aspire
to master. The aim is to benefit the
patient by relieving distress and
reducing disability, while maintaining
and improving quality of life and
minimising harm to the patient.
Ideally this is based on diagnosis,
and the first challenge is to
obtain information. Everyone who
is distressed by symptoms experiences
some difficulty communicating
their experience, and people
with learning disabilities may lack
vocabulary and have other communication
problems.
People with the most severe
developmental disabilities may be
unable to localise pain and be
unable to distinguish pain from
emotional distress. In this situation,
speak to a person who has known
the patient for a long time to ask
for descriptions of how they show
headache, toothache, stomachache,
fear and sadness. If the
patient cannot distinguish between
these symptoms, diagnosis will
require all your skill and more time
than usual.
Assessment of distress
and ‘challenging
behaviour’
Distress may be manifested as emotional
and behavioural disturbance,
which is difficult to interpret if
there are few other symptoms.
Doctors sometimes receive
requests from carers or support
workers to prescribe for ‘challenging
behaviour’, with the implication
that they interpret the behaviour
as a health problem. They may
suggest that medication is needed
to protect other people.
There are serious problems with
taking this at face value. There is a
dearth of evidence of the effectiveness
of medication to treat ‘challenging
behaviour’ in the absence
of an identifiable health problem.
Sedation used as first-aid may buy
time to arrange other solutions, but
is not an adequate substitute for
diagnosis or behavioural analysis. 1
If other people are at risk from a
patient’s behaviour, it is essential to
make referrals as appropriate.
It is not safe to assume that
everyone else will put the care of
your patient as their first concern:
a patient who is subject to abuse
and who tries to protect themselves
may be reported as showing ‘challenging
behaviour’.
www.prescriber.co.uk Prescriber 19 October 2011 33

Prescribing in practice
Diagnostic uncertainty
Be aware of the problem of ‘diagnostic
overshadowing’, whereby the
co-existence of a developmental
disorder causes doctors to discount
relevant available information.
For people with communication
problems it may be difficult to reduce
the diagnostic options. Nevertheless,
think about what is most likely for the
person. For example:
• Is psychosis more likely than anxiety?
Not unless the person has previously
diagnosed episodes of
psychosis. If choice of treatment were
based on likelihood, antipsychotic
drugs would rarely be prescribed.
• Is depression more likely than
headache? Information about the
time-course may assist, because
depression often shows diurnal
variation.
People with developmental disabilities
may have complex health
needs (see Table 2). The prevalence
of epilepsy is greatly increased in people
with more severe cognitive impairments,
and psychiatric disorders are
also more frequent. People with
Down’s syndrome have incre ased frequency
of several conditions such as
thyroid disorders and deafness.
Before prescribing, consider
whether there are particular points
in this patient’s physiology and past
medical history that need to be
considered.
Safe prescribing for people with
learning disabilities should be conventional,
conservative, cautious
and based on at least a provisional
diagnosis.

Prescribing in practice
Consider how the
prescription may be used
or misused
Medication belongs to the person
for whom it is dispensed, but for
people who have impaired decision-making
capacity it is frequently
controlled by others.
Authorisation for this should be
included in the certificate of incapacity.
Ask yourself who might gain
access to these drugs and might
exploit the person with learning
disability.
Also, always consider what you
may have to do to protect the honest
carer in these circumstances.
Suggest methods of recording medication
given if no system is already
in place in order to avoid false accusation.
Temporary and intermittent
(‘first-aid’,
‘rescue’ and ‘as required’)
prescribing
For some clinical problems it is
appropriate for patients to adjust
the dose according to the severity
of symptoms, and doctors give
advice to patients about how to do
this. If the medication is controlled
by another person (for example, if
the patient lacks decision-making
capacity), then the question arises
of who decides that the drug
should be given or omitted? There
is unlikely to be a qualified nurse
present to assess the need on each
occasion.
In this situation, it is often helpful
to ask a Community Learning

Prescribing in practice
Whatever the demands to prescribe ‘for behaviour’, the doctor’s task is
always to treat the patient within a framework of medical ethics. The ethical
basis for prescribing is to put the care of your patient as your first concern, not
the protection of others (although there may be secondary benefits to others).
Record your justification in the notes. Remember:
• first do no harm
• try and do good
• preserve autonomy of the patient wherever possible
• consider justice for all your patients and your responsibility to use resources
fairly
Table 1. Ethical framework for prescribing
Disability Nurse and pharmacist to
help you write a care plan describing
the clinical features that should
determine whether or not the drug
is given. Templates for treatment
plans and protocols are available,
and an example of one for rescue
medication for epilepsy is available
with the NHS Scotland Epilepsy
toolbox. 3
Remember to include the use of
the protocol in the certificate of
incapacity to authorise treatment if
required. The protocol should
include a description of how the
plan is to be monitored and
reviewed.
Consent
Obtain consent if possible. There
are three components to consent:
information about the options and
their consequences; decision-making
capacity; and autonomy of decision-making
(see Table 4). People
with learning disabilities may be at
a disadvantage with each of these.
Prescribers must consider how best
to ensure that the person has been
given information – it is not always
best to do it quickly at the end of a
diagnostic consultation. Record
what you have done and what you
have asked others to do.
After signing the
prescription
For the medication to be used as
intended requires that a pharmacist
receives and dispenses the prescription,
the patient or a
responsible carer stores the medication
correctly, and the patient
remembers (or is prompted) to
take the medication at the times
and dosage intended.
These tasks do not require a
doctor to carry them out if there is
teamwork. The patient, the pharmacist
and carers have roles, and
may need advice and support to
achieve these tasks.
There are prescribing decisions
that can make these tasks easier:
• consider weekly dispensing packs
from the pharmacy
• limit the amounts dispensed to
avoid stockpiles
• align the amounts dispensed of
each item on your computer to the
same time period, eg 28 days to fit
with original pack dispensing
• try to avoid dosage regimens that
require assistance from services
• low weight, eg when prescribing
paracetamol
• low eGFR
• immunocompromised
• previous GI bleeding
• low seizure threshold
• abnormal liver function tests
• diabetes
• previous gout
• abnormal BMI
• PEG feeding
• difficulty swallowing tablets
• cardiac arrhythmias
• prolonged QT symptoms
• potential for bronchospasm
Table 2. Examples of pre-existing
problems that should make you cautious
when prescribing
away from the patient’s home, such
as day centres.
Think ahead to next time
Diagnostic problems are sometimes
solved by further enquiry or investigations,
but sometimes not. When
the problem recurs, you will be
none the wiser unless you make a
provisional diagnosis.
Sometimes the difficulty is that
the patient has too many diagnoses
(eg pre-existing learning disability,
autism, epilepsy and anxiety state)
or has a rare disorder (eg Angelman
syndrome, Tourette’s syndrome).
Consider involving the local
Learning Disability Team to contribute
to the assessment.
A crisis of emotional and behavioural
disturbance may benefit from
a first-aid prescription (eg using a
benzodiazepine for anxiety), but
what should you do if the under lying
problem persists and the request to
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Prescribing in practice
• Have you considered benefits and risks with the patient to the limit of their
understanding in your consultation?
• Have you considered and negotiated the more complex risk analysis for that
particular drug or new combination with the carer or family member in the
consultation?
• What are the potential drug interactions and iatrogenic symptoms that might
be difficult to pick up in the future unless considered in advance with patient
and carer?
• Are you prescribing a drug with addictive potential or street resale value?
benzodiazepines, eg diazepam, temazepam
strong opiates, eg morphine, pethidine, fentanyl
moderate opiates, eg tramadol, dihydrocodeine
weak opioids, eg codeine
Table 3. Balance of benefits and risks
prescribe becomes long term, or if
the carers do not follow your advice?
Suggest arranging a review date, and
if the drug cannot be withdrawn
involve the local Learning Disability
Team to advise about alternative
treatment approaches.
Social care workers and the
organisations that employ them
(care providers) sometimes have difficulty
understanding the requirements
for safe use of medicines, and
they may have procedures that are
intended to benefit and protect
their clients but that have not been
negotiated with prescribers. There
has been some progress towards
improvement through training. 4
Conclusion
Try to avoid assumptions and generalisations
about people with
learning disabilities. They experience
the full range of medical
needs, but may have difficulty
communicating about them and
may lack capacity to consent to
treatment.
Use a systematic approach and
obtain advice from local specialist
teams to assist you to ensure your
prescription will be used to
achieve maximum benefit for your
patient.
References
1. Deb S, et al. Using medication to manage
behavioural problems in adults with learning
disabilities. University of Birm -
ingham, 2006. www.ld-medication.
bham.ac.uk/index.shtml.
2. http://clinicalevidence.bmj.com/
ceweb/index.jsp.
3. Toolbox for management of epilepsy in people
with a learning disability. West of
Scotland and Tayside Adult Epilepsy
Managed Clinical Network. www.
epilepsytoolbox.scot.nhs.uk.
4. Association for Real Change. www.
arcuk.org.uk/silo/files/76.pdf.
Task Comment Suggestions
Giving information consider what will make the a leaflet for carers to explain to the patient
information most readily a request to the pharmacist to explain medication benefits
understood
and adverse effects
a letter to the patient to be shared with the carer
other media such as audio, DVD, Internet, text message
Assessing decision- remember that this is a medical ask the patient to explain what they expect (‘what are the
making capacity responsibility that cannot be tablets for?’)
delegated
use the correct legal framework – AWI in Scotland, MCA in
England and Wales
use the toolkit on the BMA website 2
ask for assistance if needed; a pharmacist can give
information, a Community Learning Disability Nurse can
design care plans to enable the patient to use your advice
Considering whether duty to protect may over-ride look for evidence that a person may be subject to neglect,
autonomy is infringed duty of confidentiality exploitation or abuse
look for evidence that there is a person who should be
expected to be in a position of responsibility with a duty of
care towards the person
if concerns remain, use the procedure for protection of
vulnerable adults
Table 4. Obtaining consent; AWI = Adults with Incapacity Act, MCA = Mental Capacity Act
www.prescriber.co.uk Prescriber 19 October 2011 37

Prescribing in practice
• Does the person have necessary skills to obtain and
use prescription?
– ask for support from carers, pharmacy or local
Learning Disability Team
• Does the person understand the advice about frequency,
duration and whether to request a repeat prescription?
– write it down, ask for support from carers, pharmacy
or local Learning Disability Team
• Does the person dislike aspects of the prescription
(taste, size of tablet, colour)?
– ask pharmacy to suggest alternatives or ways to
minimise the problem, or to obtain specialist pharmacy
advice
Table 5. Ensuring that the medication is taken as intended
• formally review repeat prescription lists, indications, amounts and usage at
least annually
• consider using a Chronic Disease Management framework
• use other consultations outside structured reviews to maintain currency of
prescribing review screens
• use the appropriate prescribing screens and codes to record starting, stopping
and changing repeat medications; accurate coding here will save time
in future when you or somebody else is asking themselves why or when a
particular drug was put on repeat
• record drug side-effects and allergies accurately when they occur against
the codes and screens that appear in the highlighted summaries for the
future; in particular you should remember these codes are searched for in
GP records to download into emergency care summaries for out-of-hours
services
Table 6. Monitoring and reviewing repeat prescriptions
Declaration of interests
Dr Simpson undertakes educational
work in relation to the application
of mental health legislation
for Walkgrove Limited for a fee,
and consultancy work overseas for
the World Health Organization for
an honorarium; Dr Douglas, none
declared.
Dr Simpson is a consultant in learning
disability psychiatry and associate
medical director for Learning
Disability in NHS Greater Glasgow
and Clyde, and Dr Douglas is a general
practitioner at Tweeddale
Medical Practice, Fort William,
Scotland
38 Prescriber 19 October 2011 www.prescriber.co.uk