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A structured programme to withdraw antipsychotics among adults with intellectual disabilities

Received: 12 January 2019
Revised: 18 April 2019
Accepted: 15 May 2019
DOI: 10.1111/jar.12635
Published for the British Institute of Learning Disabilities
A structured programme to withdraw antipsychotics among
adults with intellectual disabilities: The Cornwall experience
Rohit Shankar1,2
Eve Corson
| Mike Wilcock3 | Shoumitro Deb4 | Rebecca Goodey1
| Charlotte Pretorius
| Georgina Praed
| Amanda Pell
| Dee Vujkovic1 |
Ellen Wilkinson1 | Richard Laugharne1 | Sharon Axby1 | Rory Sheehan5 |
Regi Alexander6
Cornwall Partnership NHS Foundation
Trust, Truro, UK
Background: Antipsychotic medications are used among 19%–58% of adults with
University of Exeter Medical School, Exeter,
Kernow Clinical Commissioning Group,
Saint Austell, UK
intellectual disabilities to manage challenging behaviour against the NICE guideline
recommendations. Studies show that it is possible to completely withdraw antipsy‐
Imperial College London, London, UK
chotics in about one third of adults with intellectual disabilities and a dose reduction
University College London, London, UK
of 50% or more in another third.
University of Leicester, Leicester, UK
Method: In Cornwall, over three years the present authors developed a structured
Rohit Shankar, Chygovenck Three Milestone
Industrial Estate, Truro TR4 9LD, Cornwall,
Email: [email protected]
pathway to withdraw antipsychotics among adults with intellectual disabilities which
involved people with intellectual disabilities and their carers, GPs, community learn‐
ing disability team members and pharmacists.
Results: The present authors managed to withdraw antipsychotics totally among
46.5% (33/71) and reduced over 50% of dosage in another 11.3% (8/71) of adults
with intellectual disabilities. At three months follow‐up no one required hospital ad‐
mission or change in placement.
Conclusion: It is possible to withdraw/reduce antipsychotics in a high proportion of
adults with intellectual disabilities if a concerted effort is made involving all stake‐
holders from the outset.
adults, antipsychotics withdrawal, challenging behaviour, intellectual disabilities, structured
use among people with intellectual disabilities varies between 32%
1.1 | The prevalence of antipsychotic use in people
with intellectual disabilities
Psychotropic medications such as antipsychotics, anti‐depressants,
mood stabilizers, including anti‐epileptic medications and lithium,
anti‐anxiety medications including benzodiazepines, psychostimu‐
lants, beta‐adrenergic blockers, opioid antagonists are used widely
among people with intellectual disabilities. The rate of psychotropic
J Appl Res Intellect Disabil. 2019;32:1389–1400.
and 85%, the average being around 50%–63% (Deb, 2016; Doan,
Lennox, Taylor‐Gomez, & Ware, 2013; Sheehan et al., 2015). Most
widely used among psychotropics are the antipsychotics, which is
20%–45% of the psychotropics used (Bowring, Totsika, Hastings,
Toogood, & McMahon, 2017; Doan et al., 2013; de Kuijper et al.,
2010; Sheehan et al., 2015; Tsiouris, Kim, Brown, Pettinger, & Cohen,
2013). Antipsychotics are often used off‐licence in the absence of
mental illness as no mental disorder is recorded among 36%–71% © 2019 John Wiley & Sons Ltd
SHANKAR et al.
Published for the British Institute of Learning Disabilities
of those who are prescribed antipsychotics (Clarke, Kelley, Thinn,
& Hoekstra, 2014) where a concerted structured effort was made
& Corbett, 1990; Sheehan et al., 2015). The most common reason
to withdraw antipsychotic medication. In Branford's (1996) study,
for the off‐licence use of antipsychotics is the management of prob‐
25% (31/123) achieved a total withdrawal, and in 42% (52/123) of
lem (challenging) behaviour in people with intellectual disabilities
cases, an attempt to withdraw or reduce dose precipitated problem
as among those who receive antipsychotics, in 19%–58% of cases
behaviour leading to reinstatement of antipsychotics. In Ahmed et
they are used for the management of problem behaviours (Clarke
al.’s study, 33% (12/36) achieved complete withdrawal, and another
et al., 1990; de Kuijper et al., 2010; Tsiouris et al., 2013). However,
19% (7/36) achieved at least a 50% reduction in dose. In de Kuijper et
National (NICE, ) and International Guidelines (Deb et al., 2009) rec‐
al.’s (2014) study, 44% (43/98) achieved a complete withdrawal, but
ommend that antipsychotics should not be used to treat problem
in 16% (7/43) of cases antipsychotics were reinstated at 12 weeks
behaviour unless other non‐pharmacological approaches have been
follow‐up, so 37% (36/98) remained off antipsychotics at 12 weeks.
tried and failed and the person with intellectual disabilities or others
are at serious risk of harm.
There is another recent open‐label discontinuation study from
the Netherlands (de Kuipjer & Hoekstra, 2018). In this study, of
129 participants, 61% had completely discontinued antipsychotics
at 16 weeks, 46% at 28 weeks, and 40% at 40 weeks. In 49% of
1.2 | Concerns relating to antipsychotic use and the
STOMP programme
participants, behaviour deteriorated at 16 weeks follow‐up leading
The off‐licence use of antipsychotics in people with intellectual dis‐
recruitment to these studies could be a major problem, particularly
abilities is a cause of major public health concern because (a) these
when a placebo‐controlled, randomized, double‐blind discontinu‐
medications are used in addition to existing high use of medication
ation study design is used where the people with intellectual dis‐
for physical problems (Deb & Fraser, 1994), (b) this may lead to ad‐
abilities were blindly randomly allocated to either an antipsychotic
verse effects and people with intellectual disabilities are prone to
discontinuation group (antipsychotics replaced by a placebo) or an‐
develop adverse effects of antipsychotics more frequently than their
tipsychotic continuation group (McNamara, et al., 2017; Ramerman
non‐ intellectual disabilities counterpart (Sheehan et al., 2017), (c)
et al., 2019). Similar recruitment problems were encountered in pla‐
also adverse effects in this population may be difficult to assess, and
cebo‐controlled RCT assessing efficacy of antipsychotics in people
inappropriate concomitant use of medicine to counteract adverse
with intellectual disabilities (Oliver‐Africano et al., 2010; Tyrer et
effects is a common practice, (Deb, Unwin, & Deb, 2015), (d) once
al., 2008). Open‐label studies also faced similar problems with re‐
started it is difficult to withdraw these medications (Deb, Bertelli,
cruitment (Ahmed et al., 2000). However, a recent study from the
& Rossi, 2019; Sheehan & Hassiotis, 2017), (e) lack of evidence base
Netherlands (de Kuijper et al., 2014) and our current study are en‐
demonstrating effectiveness (Deb, 2013, 2016), (f) use of antipsy‐
couraging in that respect. These show that assessment of risk factors
chotic drugs at a higher than recommended dose as well as polyp‐
affecting withdrawal using appropriate instrument and involving all
harmacy of antipsychotic use (Deb et al., 2015), (g) long‐term use
appropriate stakeholders such as people with intellectual disabili‐
without reviews (Deb, 2018), (h) difficult ethical issues involved in
ties and their carers, and also CLDT team members at the outset are
the use of these medicines and difficulty in securing explicit informed
likely to help with the recruitment.
to reinstatement of medication. It is worth mentioning here that
consent in many cases (Unwin & Deb, 2008) and (i) difficulty in car‐
rying out necessary investigations (Unwin & Deb, 2008). Because of
these concerns, the NHS England in the UK has embarked on a major
1.4 | Factors affecting withdrawal
campaign called “STopping Over Medication of People with intellec‐
A number of factors affect withdrawal. For example, Branford (1996)
tual disability, autism or both (STOMP)” (NHS England, 2016 cited in
found that a lower dose of antipsychotics, minimal psychopathology,
Branford, Gerrard, Saleem, Shaw, & Webster, 2019).
lack of aggression, stereotype and hyperactivity at baseline helped
with the withdrawal. Ahmed et al. (2000) on the other hand high‐
1.3 | Withdrawal studies
lighted the environmental and organisational factors. For example,
they suggested that experienced and full‐time staff in regular em‐
One practical way to reduce overmedication in this population is
ployment, low staff turnover, staff training, courses for managing
to withdraw antipsychotic medication. A recent systematic review
problem behaviour, less reliance on environmental restrictions are
showed that withdrawal is possible in a proportion of people with in‐
likely to facilitate the withdrawal process. deKuijper and Hoekstra
tellectual disabilities (4%–74%) (Sheehan & Hassiotis, 2017). However,
(2018) found that female gender, a lower rate of baseline prob‐
most of the studies included in this systematic review are from the
lem behaviours, and lower baseline dosage are in favour, and the
United States that included patients from long‐term institutions.
presence of severe behaviour, and autonomic and extrapyramidal
More relevant to our practice in the UK are the withdrawal studies in
symptoms at baseline are factors against a successful withdrawal.
Europe that included people with intellectual disabilities from com‐
deKuijper and Hoekstra (2018) also found that the presence of co‐
munity settings. Deb et al.’s (2019) review showed that there were
morbid autism, a higher dose of antipsychotic drug, higher behaviour
two studies in the UK (Ahmed et al., 2000; Branford, 1996) and one
rating and akathisia scores, and more‐frequent worsening of health
recent one from the Netherlands (de Kuijper, Evenhuis, Minderaa,
during discontinuation were associated with a lower incidence of
SHANKAR et al.
Published for the British Institute of Learning Disabilities
complete discontinuation. These factors also affect reinstatement
could be due to withdrawal symptoms which might occur after the
rate. For example, Janowsky, Barnhill, Khalid, and Davis (2006)
long‐term use of antipsychotics. These include akathisia, dyskinesia,
found within a large population in an American residential institu‐
anxiety, sleep problems and agitation (Cerovecki et al., 2013; Correll,
tion, 66.3% (55/83) of individuals remained antipsychotic‐free al‐
2010 cited in Beumer, 2017). These symptoms might be misinterpreted
most 10 years after withdrawal. However, in a subsequent study,
as recurrence of the original problem behaviour (Beumer, 2017).
Janowsky, Barnhill, Khalid, and Davis (2008) demonstrated that,
Rebound akathisia might appear within the first few days, whereas
unfortunately, it becomes difficult to withdraw antipsychotic medi‐
rebound parkinsonism usually emerges after a week and rebound
cations altogether in a very high proportion of those who showed
dyskinesia might only become apparent within a month (Cerovecki et
worsening of behaviour after one or two attempts of withdrawal.
al., 2013). However, most studies show that emergent extrapyramidal
symptoms seem to improve after a few weeks (Christian, Snycerski,
Singh, & Poling, 1999; deKuijper et al., 2014). This is an indicator for
1.5 | Withdrawal symptoms
the clinicians who are considering withdrawal of antipsychotics that
Although most studies have shown that behaviour improves after
instead of reinstating antipsychotics straight away, they should wait
withdrawal of antipsychotics but in a proportion of cases an attempt
(if necessary with the help of as necessary PRN prescription) until the
of withdrawal fails because of worsening of behaviour. Part of this
behaviour improves (Deb et al., 2009) (see Figure 1).
Medication not
Factors to consider:
review of medications and
reasons for prescription,
including medications for
problem behaviours that were
prescribed by someone else
type, frequency, severity and
duration of problem
previous response to
individual circumstances
whether alternatives are
relapse plan.
Develop a relapse plan:
wait, see and monitor
specify a timescale
consider non-medication
consider ‘prn’ medication
reconsider withdrawal
symptoms which may
improve at follow up
consider re-prescribing
Rate of withdrawal will depend on:
type (e.g. depot vs. oral), dosage,
duration, adverse effects of
individual circumstances.
F I G U R E 1 Flow chart for considering
withdrawal of medication (adapted from
Deb et al., 2009; http://www.ld-medic​
No deterioration in behaviour
Deterioration in behaviour
Continue with regular reviews if
Consider relapse plan
SHANKAR et al.
Published for the British Institute of Learning Disabilities
1.6 | Need for a structured pathway
the person as well as their carers. In the process of withdrawal, clini‐
cians also need to consider factors mentioned earlier in the text that
It is clear that in order to succeed with the withdrawal of antipsychot‐
may influence successful withdrawal, including carer training and or‐
ics, it is imperative to follow a structured pathway, which includes a
ganisational support structure. No study so far described a structured
withdrawal plan presented in Figure 1 and proper consideration of
pathway for withdrawal. Therefore, in Cornwall, the present authors
initiation of medicinal treatment as per the International Guideline
have decided to develop a structure around the withdrawal pathway
(Deb et al., 2009) (see Table 1) recommendations. Furthermore, the
before embarking on antipsychotic withdrawal in adults with intellec‐
clinicians need to consider complex factors involved in prescribing
tual disabilities to support the NHS England STOMP initiative, which
which will affect the withdrawal process such as variables related to
is supported by many organisations including the Royal College of
patients, treatment modalities, type and dosage of medication, envi‐
Psychiatrists in the UK (Royal College of Psychiatrists, 2016).
ronment which may not be appropriate for the person, and other re‐
The project was set out as a quality improvement (QI) initiative
sources, including appropriate psychosocial support structure around
using the “Plan, Do, Study, Act (PDSA)” model (NHS Improvements,
TA B L E 1 Main recommendation in the International Guideline
(Deb et al., 2009; http://ld-medic​
• Ensure that an assessment has been conducted and recorded
prior to initiating treatment.
• Ensure that an appropriate formulation is carried out and a treat‐
ment plan drawn up, prior to instigating any interventions.
• Ensure that appropriate physical examinations and investigations
have been carried out.
• Assess the person’s capacity to consent to treatment.
• Allow the person and/ or their family or carers to influence the
decisions that are made and included in the treatment plan.
• Clarify to the person and/ or their family or carers if the medica‐
tion is prescribed outside their licensed indication. If this is the
case, they should be told about the type and quality of evidence
that is available to demonstrate its effectiveness.
• Where possible, and when necessary, discuss the formulation and
treatment plan with other relevant professionals.
• The treatment plan should be part of a broader person‐centred
care plan.
• The treatment plan must comply with the country’s legal
• Identify a key person who will ensure that medication is adminis‐
tered appropriately and communicate all changes to the relevant
• Medication might be used at the same time as non‐medication
• Provide the person and/ or their family or carers with a written
treatment plan at the time of prescribing.
• Discuss with the person and/ or their family, carer, or key person,
common and serious adverse events related to the treatment
(where possible, they should provide accessible information). Also
advise what action is needed in case of a serious adverse event.
• Consider the communication needs of the person.
• When “prn”/ “as required” medication is prescribed, provide as
much information as possible about why and when the medica‐
tion may be used and monitor this regularly.
• The method and timing of the assessment of treatment outcome
should be set at the beginning of the treatment.
• As far as possible, there should be an objective way to assess
outcomes (the use of standardized measures is recommended).
• Ensure that follow‐up assessments of treatment outcome and
adverse effects have taken place.
• As far as possible, one medication should be prescribed at a time.
• In general, the medication should be used within the national
recommended dose range.
• Consideration for withdrawing medication and exploring non‐
medication management options should be ongoing.
• Document all appropriate information and share it with appropri‐
ate individuals when necessary.
2018). The “Plan” was to identify all people with intellectual disabili‐
ties on APT in Cornwall, having no major mental disorder. The aim of
the first QI cycle was to reduce the antipsychotic burden by 20% of
the identified target population in one year and then realign expec‐
tations for next cycles subsequently. “Do” was to undertake a struc‐
tured reduction plan as identified in the methods section. “Study” was
to collect data post‐attempt and compare to see if 20% reduction was
achieved and if not why not. It would also allow an opportunity to
reflect on the impact, barriers and what went well of the change and
what was learned including looking into what worked and what did
not and why. “Act” was to find solutions to overcome the challenges
and to plan the next cycle. Four cycles of PDSA were carried out with
the final one leading to using the principals suggested by theoretical
evidence established (Shankar, Wilcock, Oak, McGowan, & Sheehan,
2019). It was recognized during the QI cycles that new approaches
and tools need to be developed to overcome the challenges as avail‐
able methods could not lend itself directly on occasions to the QI
improvement cycles. However, QI methodology has been the back‐
ground for the current project to guide and evidence improvements.
In this paper, the present authors have described the methods
used for this structured programme and the overall outcome.
2 | M E TH O D
In Cornwall, UK, the present authors proceeded with the withdrawal
programme in several steps that are described here. At the heart
of our programme was the wider stakeholder involvement including
people with intellectual disabilities and their carers (both family and
paid carers), GPs, community pharmacists and community learning
disability team (CLDT) members.
2.1 | Step1: Primary care and
identification of the cohort
As a first step, the present authors invited local GPs to attend a STOMP‐
related one‐hour tutorial in which the present authors described the
STOMP initiative and our proposal to withdraw antipsychotic medication.
A GP prescribing lead from each primary care practice was invited to at‐
tend these meetings and disseminate the learning within their own prac‐
tices. There was a follow‐up meeting after 12 months of the initial tutorial
SHANKAR et al.
Published for the British Institute of Learning Disabilities
in which the present authors have administered a 21‐item questionnaire
to assess GPs knowledge on the subject (Shankar & Wilcock, 2018).
2.4 | Step 4: Development of tools
Involving GPs at the outset made it easy for us to access GP reg‐
The present authors developed a number of tools to facilitate the
ister‐based database. The present authors have used Read codes (a
process of withdrawal. These included ECLIPSE (already mentioned
coded thesaurus of clinical terms) to identify adults with intellectual
in the earlier section), Risk Assessment Pyramid (RAP), E‐Connect,
disabilities who are on antipsychotic medication in the area. The pres‐
the Purple book and the STOMP STAMP.
ent authors also used a software program called ECLIPSE (Electronic
The RAP describes the factors (personal, behaviour related,
Checking Leading to Improved Prescribing Safety and Efficiency)
drug‐related, psychosocial‐environment, carer/staff training etc.)
to identify all people on the Learning Disability Quality Outcome
associated with a high‐risk versus low‐risk withdrawal process. This
Framework (QoF) register on antipsychotics who did not have a re‐
allows triaging and stratification for withdrawal and allows an appro‐
corded mental disorder in 44 practices in Cornwall.
priate risk assessment and communication with people with intellec‐
The present authors also carried out an audit of people with intel‐
tual disabilities and their carers.
lectual disabilities on antipsychotics who were discharged back to pri‐
E‐connect was developed to identify nine commonly identified
mary care from the secondary care between 2010 and 2015 to assess
dimensions of treatment response that are clinically and holistically
in what proportion of cases an annual health check (AHC) involved a
important and which are commonly discussed in care plan meetings. E‐
satisfactory antipsychotic medication review (Shankar et al., 2016).
connect summarizes the outcome score in a visual format (see Figure 2).
Table 2 describes the information gathering tool that allows us to use an
2.2 | Step 2: Involving all stakeholders
The present authors organized a meeting where the people with intel‐
algorithm to summarize the findings in a visual format. In principle, it is a
care planning tool bringing together information collected from current
good practice policies and established tools as a single infographic.
lectual disabilities and their carers were invited, and the present authors
STOMP STAMP describes three possibilities after the antipsy‐
frankly discussed all the issues involved in the withdrawal process. The
chotic withdrawal is considered, which may indicate a successful
benefits and risks were highlighted. It was expressed that over time
withdrawal (Green) or inability to withdraw (Red) (see Figure 3).
diagnostic systems have changed (Autism used to be mistaken as child‐
No formal training was provided on the tools. However, case stud‐
hood schizophrenia), medication withdrawal might expose a hitherto
ies were used to implement them. A power point presentation was
undiagnosed mental illness or uncover an “unmet need” such as an
used to help outline to new carers/patients the reasons why the
unsuitable placement which will need addressing. The present authors
Behaviour that concerns (BtC) Connect is helpful.
discussed that in some people withdrawal may lead to hospital admis‐
sion in the short term to keep patients and others safe. However, pa‐
tients and their carers and other stakeholders remained totally involved
in the withdrawal and relapse prevention strategy (see Figure 1).
2.5 | Step 5: Assessment of patients for withdrawal
At this stage, all referrals for withdrawing antipsychotic medication
were assessed using the risk assessment pyramid (RAP). This allowed
2.3 | Step 3: Secondary care
us to prioritize patients for withdrawal and have a full discussion about
risk assessment and management with people with intellectual disabil‐
Within the secondary care, the present authors involved CLDT mem‐
ities and their carers. This allowed the clinicians to consider all factors
bers regularly to discuss the strategy for withdrawal. The multi‐disci‐
that may influence the withdrawal process. Usually dose changes were
plinary team (MDT) was also involved in the discussion of individual
10%–25% of the baseline dose reduced every 6–8 weeks.
cases when withdrawal was considered. However, the present authors
integrated primary and secondary care within a whole system ap‐
proach by establishing a STOMP oversight committee (project team).
2.6 | Step 6: Follow‐up and contingency plan
This committee was led by the clinical director of the local special‐
An appropriate arrangement was made to follow up patients during
ist Learning Disability service with multiagency representation from
and after the gradual withdrawal. This involved a contingency plan (see
service users, primary care liaison nurses, community pharmacists,
Figure 1) which was discussed fully with the people with intellectual
commissioners, social care and private providers with regular meet‐
disabilities and their carers. This was devised to alleviate patients’ and
ings to discuss ideas and review progress. After multiagency consulta‐
their carers’ anxiety about the withdrawal as they were worried about
tion, and receiving patient/family/carers feedback, the project team
losing their placement or worsening of behaviour or hospital admission.
developed a framework to stratify, support and assess withdrawals.
In secondary care, the present authors also carried out an audit,
specifically looking at antipsychotic prescribing patterns in the local
CLDT during the whole month of October 2015 (Niven, Goodey,
Webb, & Shankar, 2018). The present authors were particularly in‐
3 | R E S U LT S
3.1 | Step 1: Primary care: findings
terested to identify patterns and associations between prescribing
Of the 60 expected GP participants, the tutorial were attended by 44
and MDT working and the use of the bio‐psycho‐social formulation.
GPs (73%) and the follow‐up meeting by 42 (70%). Ninety per cent GPs
SHANKAR et al.
Published for the British Institute of Learning Disabilities
Visual representation of E‐Connect summary findings [Colour figure can be viewed at]
in the follow‐up meeting completed the questionnaire. For 16 ques‐
care between 2010 and 2015, only 50% had a satisfactory antipsy‐
tions, more than 80% GPs gave correct responses whereas the other
chotic review. Lack of multi‐disciplinary working was also associ‐
five questions received a correct response from less than 80% of the
ated with a higher rate of use of antipsychotic medication (Niven
participants. Majority of the GPs felt psychotropic medication man‐
et al., 2018).
agement in people with intellectual disabilities should be specialist led.
The general population of Cornwall is 538,000 (National Office
of Statistics, 2018). Using Read codes and ECLIPSE, the present au‐
3.2 | Step 2: Patient/carer involvement: findings
thors have identified 243 adults with intellectual disabilities on anti‐
As a result of the wider stakeholder involvement, a dedicated
psychotics (see Table 3) in the GP registers for whom no psychiatric
STOMP forum was developed involving patients who came off their
diagnosis was recorded.
antipsychotics (experts by experience) to advise professionals and
The audit showed that a significant minority of adults with intel‐
engage other service users. The experts by experience helped to co‐
lectual disabilities according to the Learning Disability registers in
design some of the tools particularly the Purple Book and the BtC
participating GP practices have been prescribed either antipsychot‐
connect (E‐connect). The input on the Purple Book included choos‐
ics alone or in combination with antiepileptics. No clear rationale for
ing suitable photos, designs and highlighting the need to ensure each
use of antipsychotics was recorded in approximately 60% of those
person with intellectual disabilities is different and has a different
who received antipsychotic medication. The proportion receiving an
set of needs thus creating the framework of information to the carer
AHC varied between 70% and 100% among GP practices. The rate
and a separate tool to use in a person‐centred manner.
of completed routine blood tests as specified by the local psychia‐
trists (Liver Function Test, Thyroid Function Test, Cholesterol and
Lipid profile, Glycalated Haemoglobin and Full Blood Count) among
3.3 | Step 3: Secondary care: findings
those who received antipsychotics varied between 60% and 90%
The audit of the secondary care electronic records identified 106
among different GP practices that took part in the study.
people with intellectual disabilities who were open to the CLDT for
There was no evidence of follow‐up of patients who declined
the assessment and management of problem behaviour. The present
or missed either blood tests or an AHC, or assessment of their
authors found 61 of them were prescribed antipsychotic medication.
mental capacity or best interest decision (if appropriate). Of those
The present authors further examined the number of MDT assess‐
patients discharged on antipsychotics from primary to secondary
ments received by those who were on antipsychotic medication.
SHANKAR et al.
Published for the British Institute of Learning Disabilities
TA B L E 2
E‐connect algorithm
Physical health
Physical health needs fully identi‐
fied, understood and supported
through health action plan within
6 months of referral to Service
Health needs assessment under‐
way within 6 months of referral
Health needs not identified,
understood or supported ‐ no
health action plan – within
6 months of referral
Mental health
Documented diagnosis and re‐
corded multi‐disciplinary formula‐
tion – within 6 months of referral
Documented diagnosis or
multi‐disciplinary formulation –
within 6 months of referral
No documented diagnosis or
multi‐disciplinary formulation –
within 6 months of referral
Appropriate prescribing i.e. to treat
a recorded diagnosis
Non‐antipsychotic psychotropic
without recorded diagnosis
Antipsychotic without recorded
mental illness diagnosis, or 2
antipsychotics in absence of
documented valid rationale
Response to medication (CGI
≥+2 change
No or +1 change
≤−1 change
Quality of life
• Has person‐centred plan
• Has active and effective com‐
munication plan
• Has personalized daily
• Has friends/is not lonely
• Generally happy/content
• Able to effectively access
required mainstream services.
4 + indicators
2–4 indicators
<2 indicators
Level of risk (guided by BPI‐S)
More than monthly and not severe
(does not inflict significant
Weekly – monthly and/or
Daily‐weekly and/or severe
Risk management to include reac‐
tive risk management such as “As
required medication,” restraint,
environmental restriction, lack of
privacy etc
Risk management plans are in
place that are legal, proportion‐
ate, effective, reviewed and part
of a wider plan
Risk management plans are
in place but have not been
reviewed using MCA and
Risk management plans are not in
place, or are not legal, propor‐
tionate, and effective, reviewed
and part of a wider plan
Functional understanding (by
everybody involved in person's
care e.g. staff/support team, clini‐
cal team)
Function of BtC fully understood
and needs effectively met, i.e. no
longer or rarely needing to resort
to E‐Connect to communicate
unmet need
File review to support under‐
standing of history of previous
needs/support strategies
Function of BtC is partially
understood (some MDT assess‐
ments taken place and advice
provided) but had partial
impact on E‐Connect or not yet
Partial file review
Function of BtC not understood
at all
MDT assessment work thus far
has had no impact on E‐Connect
No file review to support under‐
standing of history of previous
need/support strategies
Capability of environment (guided
by PBS competency framework
audit tool)
Fully met
Partially met and working on
Does not meet
Abbreviations: BtC, Behaviour that concerns (challenging/problem behaviour); MDT, Multi‐disciplinary Team; MCA, Mental Capacity Act; PBS,
Positive Behaviour Support; BPI‐S, Behavior Problems Inventory‐Short Form (Rojahn et al., 2012).
Sixty‐six per cent of the clients had not had a nursing needs/ physical
antipsychotics are considered either as a new prescription or for the
health assessment completed within the last one year. A high propor‐
renewal by secondary care medical team. This incorporates all alter‐
tion (72%) of them did not receive an initial behavioural assessment/
natives to prescribing antipsychotics, a diagnosis and any rationale
functional analysis (Niven et al., 2018).
for medication use along with a possible formulation.
Of the total cohort, only two (3%) clients received all five MDT as‐
sessments they are expected to receive. More worryingly, 13% (8) did
not receive any MDT assessments at all, whereas 31% (19) received
3.4 | Outcome
only one, 16% (10) two, 23% (14) three and 13% (8) four assessments.
Over the ten months period between April 2018 and January 2019,
As a result of the Cornwall experience, the present authors
71 adults with intellectual disabilities who were on antipsychotics in
have created a new refined template for clinic letters from second‐
the absence of a psychiatric diagnosis were assessed for withdrawal.
ary care to the local GPs. This is now used for new referrals where
Of them, 33 (46.5%) achieved a complete withdrawal and another
SHANKAR et al.
Published for the British Institute of Learning Disabilities
8 (11.3%) achieved over 50% dose reduction but not a total with‐
it is also important to involve people with intellectual disabilities
drawal (see Table 3). However, withdrawal attempt failed in 7 (9.8%)
and their carers from the outset. Some of the reasons for success
people, where antipsychotic dose had to be increased after an initial
in our study are (a) involvement of patients/carers at the outset and
dose reduction. At three months follow‐up no one needed reinstate‐
also the setting up of a contingency plan in case if things go wrong
ment of antipsychotics. Using the STOMP STAMP, the present au‐
at the time of withdrawal, (b) involvement of the multi‐disciplinary
thors have identified further 5 (7%) adults who are in inappropriate
team throughout the withdrawal process, and triaging/stratification
placements and need to be in a more appropriate placement before
at the outset of patients suitable for discontinuation by using RAP
antipsychotic withdrawal could be considered.
which assessed all the relevant risk factors that may affect a suc‐
cessful discontinuation of antipsychotics, and (c) continuing support
4 | D I S CU S S I O N
to patients/carers following the discontinuation. It is important to
understand the reasons for patient/carer's concern regarding with‐
drawal. In our study almost unanimously, carers and people with in‐
The Cornwall experience shows that it is possible to discontinue
tellectual disabilities expressed concern regarding the withdrawal of
antipsychotic medication in adults with intellectual disabilities even
antipsychotics as they did not want to take the risk of upsetting the
after many years of use in a high proportion of cases (46.5%). Our
status quo. The present authors found that a frank discussion with
success rate for complete withdrawal (46.5%) is similar to previous
them about the pros and cons of withdrawal was very helpful. The
community‐based studies in the UK; namely Branford (1996) (25%)
carers will feel reassured when it is highlighted to them that it has
and Ahmed et al. (2000) (33%), and the Netherlands 44% (deKuijper
been shown from other studies that withdrawal is possible in a high
et al., 2014), and 46% at 28 weeks and 40% at 40 weeks (deKui‐
proportion of cases. Nevertheless, it should also be highlighted that
jper & Hoekstra, 2018). The failure rate is low (9.8%). Further dose
the attempt to withdraw will fail in some cases. Under those circum‐
reduction is ongoing for some who achieved >50% dose reduction
stances, the patients and carers should be reassured that there is a
currently (11.3%). Therefore, some of them may become totally
structured back‐up plan available as in Figure 1. They should also be
antipsychotic‐free in future. Similarly, of the further 18 (25%) pa‐
informed that in several cases worsening of behaviour upon with‐
tients who are undergoing dose reduction and has achieved so far
drawal is not due to the resurgence of previous problem behaviour
<50% dose reduction, some may achieve complete discontinuation
but due to withdrawal symptoms which are likely to disappear in
or >50% dose reduction in future. Our success of engagement was
many patients after a few weeks. As required PRN medication could
highlighted by no breakdowns of placement or hospital admissions
be used in the meantime to tide them over the difficult period of
upon withdrawal, and successful identification of relevant biochem‐
worsening of behaviour. It is also important to highlight the risk of
istry changes in patients which otherwise would not have been pos‐
long‐term adverse effects from medication and the findings from
sible without the structured programme of withdrawal.
previous studies that withdrawal will lead to a better quality of life
However, in order to achieve this success, a concerted effort was
for people with intellectual disabilities. Involving patients and carers
needed, and it was imperative to follow a structured pathway. At
helped us to develop local champions and local patient and carer
the heart of this structured pathway is the involvement of all stake‐
advisory groups consisting of people who are experts by experience.
holders from the outset. Along with the GPs and CLDT members,
This proved a valuable part of the pathway for withdrawal.
F I G U R E 3 Definition of STOMP
STAMP categories [Colour figure can be
viewed at]
SHANKAR et al.
Published for the British Institute of Learning Disabilities
The present authors found that involving local GPs has helped
with the baseline data. The National Guideline (Unwin & Deb, 2010)
to raise awareness among them about the issue of withdrawal, in
also provides a sample draft information sheet for handing over to pa‐
particular, and the use of psychotropics, in general. Although they
tients and carers in the clinic (see Appendix 1) (Http://www.ld-medic​
did not want to take responsibility for withdrawing antipsychotics The Purple Book was received very well by the pa‐
themselves and felt that this should be done in the secondary care
tients and their carers. This tool made the families feel empowered
settings, they were happy to get more involved with the withdrawal
according to the feedback the present authors have received from
process. This involvement also helped to gain access to GP regis‐
them. The feedback suggests that the concept was easy to explain
ters and encouraged the local GPs to integrate a meaningful med‐
and assimilate. The stakeholders’ feedback suggests that there was
ication review within their AHC. In future dedicated senior nurse
some difficulty with E‐connect. Although initially there was curiosity
practitioners or community pharmacists may liaise successfully with
and interest there was difficulty in understanding the concept and
primary care to initiate and help with the withdrawal process and
benefits which it might provide. However, working through a case
act as a conduit between the primary and the secondary care teams.
example helped when an infographic emerged. For example, an indi‐
Our finding of 60% of patients in GP registers who were on antipsy‐
vidual in the patient advisory group wanted his “E‐connect” done and
chotics without a recorded clear rationale for this prescription was
when done asked for a print out of it and labelled it as “me.”
similar to what was reported before (Sheehan et al., 2015).
Although the pathway and the tools the present authors have
Withdrawal would not be successful without the full involve‐
used within our concerted programme of withdrawal seem useful,
ment of CLDT members. A regular review involving the MDT includ‐
none of them have been properly field tested. Therefore, the pres‐
ing community pharmacists is essential in this respect. However, one
ent authors do not know about their psychometric properties, which
has to consider the time constraint for which it may be a good idea to
the present authors hope to address in a future project. The pres‐
set up a specific medication review clinic as the present authors have
ent authors also did not have a control group to assess whether our
proposed in Cornwall, which is similar to lithium clinics implemented
pathway is any better than the treatment as usual (TAU) group. Our
in the general psychiatric services. The use of an appropriate tool
study is also restricted to one geographic area, so the present au‐
such as RAP will help in the triaging process and prioritize patients
thors would not know whether these findings could be generalized
for withdrawal who are likely to succeed. This will save time as well.
throughout the country or not. Although our study has shown that
In this respect, all the factors including, personal, treatment‐related
with a concerted effort and involving all stakeholders particularly
and environmental, and psychosocial must be considered carefully
including people with intellectual disabilities and their carers from
to achieve a successful withdrawal.
the outset could achieve antipsychotic discontinuation and dose
The use of certain tools as the present authors have done in our
reduction in a reasonable number of participants, the programme
study will smooth the path to withdrawal. Both E‐connect and Purple
was time‐consuming which was associated with an additional cost
book help to inform and empower patients and their carers. They also
to the NHS. However, the present authors feel that by putting more
help clinicians to monitor the process at each follow‐up comparing
time and resource in the immediate future a programme like ours
TA B L E 3 Outcome of Cornwall
antipsychotic withdrawal programme
N (%)
Cornwall total population
Cornwall adult population
Number of people with intellectual disabilities according to GP registers
Number of adults with intellectual disabilities known to social services
Expected number of adults with intellectual disabilities on any psychotropic
medication (as per Sheehan et al., 2015)
Expected number of adults with intellectual disabilities on antipsychotic medica‐
tion (as per Sheehan et al., 2015)
Number of adults with intellectual disabilities who are on antipsychotics without
a diagnosis of psychosis
Number of adults with intellectual disabilities who were assessed for antipsy‐
chotic withdrawal between April 2018 and January 2019 (10 months)
Number of adults who achieved a total withdrawal of antipsychotics
33 (46.5%)
Number of adults who achieved >50% dose reduction but not total withdrawal
of antipsychotics
8 (11.3%)
Ongoing withdrawal <50% dose reduction
18 (25.3%)
Number of adults who remained antipsychotic‐free at 3 months
33 (46.5%)
Withdrawal attempt failed
7 (9.8%)
Needs appropriate placement before withdrawal can be considered
5 (7%)
SHANKAR et al.
Published for the British Institute of Learning Disabilities
would have potential to save more time and resources, and human
sufferings in the long run. This could be tested in a future study by
carrying out an appropriate economic evaluation. Therefore, there
is an urgent need to put the Cornwall experience in test by running
an open‐label multi‐centre cluster randomized controlled trial (RCT)
where participants will be allocated randomly to either an inter‐
vention group which will implement a structured discontinuation
programme and compare the outcome with a control group of TAU
for whom no structured discontinuation programme will be imple‐
mented using standardized outcome measures including measures
for quality of life. An economic evaluation of cost‐effectiveness of
the programme is also required to help commissioners in the NHS
to take an informed decision. One major component that is missing
in our project is a structured psychoeducational programme (PEP)
for prescribers, carers and the CLDT members. In future it would be
necessary to develop such a programme using a co‐design approach
in which all the stakeholders are involved in the development of the
programme from the outset. This training programme could then be
implemented within the wider RCT for the withdrawal programme.
If possible, it would be useful to calibrate the weighted contribution
of each component of such a complex intervention.
5 | CO N C LU S I O N
The Cornwall experience has shown that successful withdrawal/
dose reduction of antipsychotics prescribed without a specific rel‐
evant indication is possible in a large number of adults with intel‐
lectual disabilities if a concerted effort is made using a structured
approach and involving all stakeholders, particularly people with in‐
tellectual disabilities and the carers from the very beginning. Certain
tools may facilitate this process as well. In future, an appropriately
designed RCT is needed to formalize the pathway and assess its clini‐
cal and economic effectiveness.
RS has received institutional and research support and personal fees
from UCB, Eisai, Special Products and Desitin outside the submitted
work. MW,SD,RG,EC,CP,GP,AP,EW,RL,SA,RS and RA do not report
any conflict of interest.
Rohit Shankar
Rebecca Goodey
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How to cite this article: Shankar R, Wilcock M, Deb S, et al. A
structured programme to withdraw antipsychotics among
adults with intellectual disabilities: The Cornwall experience. J
Appl Res Intellect Disabil. 2019;32:1389–1400. https​://doi.
SHANKAR et al.
Published for the British Institute of Learning Disabilities
(a copy should be handed over to the person at the time of prescribing, which should be kept in their Person‐Centred Care Plan File) (Deb,
Clarke, & Unwin, 2006; http://www.ld-medic​; Unwin & Deb,2010).