Received: 12 January 2019 | Revised: 18 April 2019 | Accepted: 15 May 2019 DOI: 10.1111/jar.12635 ORIGINAL ARTICLE 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 1 Eve Corson | Mike Wilcock3 | Shoumitro Deb4 | Rebecca Goodey1 1 | Charlotte Pretorius 3 | Georgina Praed 3 | Amanda Pell | | Dee Vujkovic1 | Ellen Wilkinson1 | Richard Laugharne1 | Sharon Axby1 | Rory Sheehan5 | Regi Alexander6 1 Cornwall Partnership NHS Foundation Trust, Truro, UK Abstract 2 Background: Antipsychotic medications are used among 19%–58% of adults with University of Exeter Medical School, Exeter, UK 3 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‐ 4 Imperial College London, London, UK chotics in about one third of adults with intellectual disabilities and a dose reduction 5 University College London, London, UK of 50% or more in another third. 6 University of Leicester, Leicester, UK Method: In Cornwall, over three years the present authors developed a structured Correspondence Rohit Shankar, Chygovenck Three Milestone Industrial Estate, Truro TR4 9LD, Cornwall, UK. 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. KEYWORDS adults, antipsychotics withdrawal, challenging behaviour, intellectual disabilities, structured pathway 1 | I NTRO D U C TI O N 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% wileyonlinelibrary.com/journal/jar © 2019 John Wiley & Sons Ltd | 1389 1390 | 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. 1391 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). CONSIDER WITHDRAWAL Medication not withdrawn Factors to consider: • Medication withdrawn Follow-up, Assess • • • • • 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 behaviours previous response to withdrawal individual circumstances whether alternatives are available relapse plan. Develop a relapse plan: • • • • • • wait, see and monitor behaviour specify a timescale consider non-medication intervention consider ‘prn’ medication reconsider withdrawal symptoms which may improve at follow up consider re-prescribing medication Rate of withdrawal will depend on: - type (e.g. depot vs. oral), dosage, duration, adverse effects of medications individual circumstances. Monitor F I G U R E 1 Flow chart for considering withdrawal of medication (adapted from Deb et al., 2009; http://www.ld-medic ation.bham.ac.uk) No deterioration in behaviour Deterioration in behaviour Continue with regular reviews if necessary Consider relapse plan 1392 | 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-medication.bham.ac.uk) • 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 framework. • Identify a key person who will ensure that medication is adminis‐ tered appropriately and communicate all changes to the relevant parties. • Medication might be used at the same time as non‐medication managements. • 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. 1393 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 1394 | SHANKAR et al. Published for the British Institute of Learning Disabilities FIGURE 2 Visual representation of E‐Connect summary findings [Colour figure can be viewed at wileyonlinelibrary.com] 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. 1395 Published for the British Institute of Learning Disabilities TA B L E 2 E‐connect algorithm Green Amber Red 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 Medication 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 score) ≥+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 activities/routine • 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 damage) Weekly – monthly and/or moderate 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 effectiveness 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 reviewed Partial file review Function of BtC not understood at all MDT assessment work thus far has had no impact on E‐Connect risk 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 meeting 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 1396 | 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 wileyonlinelibrary.com] | SHANKAR et al. 1397 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 ation.bham.ac.uk). 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 538,000 Cornwall adult population 469,000 Number of people with intellectual disabilities according to GP registers 2,620 Number of adults with intellectual disabilities known to social services 1,700 Expected number of adults with intellectual disabilities on any psychotropic medication (as per Sheehan et al., 2015) 833 Expected number of adults with intellectual disabilities on antipsychotic medica‐ tion (as per Sheehan et al., 2015) 357 Number of adults with intellectual disabilities who are on antipsychotics without a diagnosis of psychosis 243 Number of adults with intellectual disabilities who were assessed for antipsy‐ chotic withdrawal between April 2018 and January 2019 (10 months) 71 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%) 1398 | 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. C O N FL I C T O F I N T E R E S T 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. ORCID Rohit Shankar Rebecca Goodey https://orcid.org/0000-0002-1183-6933 https://orcid.org/0000-0001-7385-2130 REFERENCES Ahmed, Z., Fraser, W., Kerr, M. P., Kiernan, C., Emerson, E., Robertson, J., … Thomas, J. (2000). Reducing antipsychotic medication in peo‐ ple with a learning disability. British Journal of Psychiatry, 176, 42–46. https://doi.org/10.1192/bjp.176.1.42 Beumer, S., & Anne Maria Maes‐Festen, D. (2017).Reduction or dis‐ continuation of antipsychotics for challenging behaviour in adults with intellectual disability: Why does it fail? Lancet Psychiatry, 4, e2. https://doi.org/10.1016/S2215-0366(17)30041-X Bowring, D. L., Totsika, V., Hastings, R. P., Toogood, S., & McMahon, M. (2017). Prevalence of psychotropic medication use and association with challenging behaviour in adults with an intellectual disability: A total population study. Journal of Intellectual Disability Research, 61(6), 604–617. https://doi.org/10.1111/jir.12359 Branford, D. (1996). Factors associated with successful or unsuccessful withdrawal of antipsychotic drug therapy prescribed for people with learning disabilities. Journal of Intellectual Disability Research, 40(4), 322–329. Branford , D., Gerrard, D., Saleem, N., Shaw, C., & Webster, A. (2019). Stopping over‐medication of people with intellectual disability, Autism or both (STOMP) in England part 1 – history and background of STOMP. Advances in Mental Health and Intellectual Disabilities, 13 (1), 31–40. https://doi.org/10.1108/AMHID-02-2018-0004 Cerovecki, A., Musil, R., Klimke, A., Seemüller, F., Haen, E., Schennach, R., … Riedel, M. (2013). Withdrawal symptoms and rebound syndromes associated with switching and discontinuing atypical antipsychotics: Theoretical background and practical recommendations. CNS Drugs, 27, 545–572. https://doi.org/10.1007/s40263-013-0079-5 Christian, L., Snycerski, S. M., Singh, N. N., & Poling, A. (1999). Direct service staff and their perception of psychotropic medication in non‐ institutional settings for people with intellectual disability. Journal of Intellectual Disability Research, 43, 88–93. Clarke, D. J., Kelley, S., Thinn, K., & Corbett, J. A. (1990). Psychotropic drugs and mental retardation: 1. Disabilities and the prescription of drugs for behaviour and for epilepsy in 3 residential settings. Journal of Mental Deficiency Research, 28, 229–233. Correll, C. U. (2010). From receptor pharmacology to improved out‐ comes: Individualising the selection, dosing, and switching of anti‐ psychotics. European Psychiatry, 25(suppl 2), S12–21. de Kuijper, G., Evenhuis, H., Minderaa, R. B., & Hoekstra, P. J. (2014). Effects of controlled discontinuation of long‐term used antipsychot‐ ics for behavioural symptoms in individuals with intellectual disabil‐ ity. Journal of Intellectual Disability Research, 58(1), 71–83. https://doi. org/10.1111/j.1365-2788.2012.01631.x de Kuijper, G., Hoekstra, P., Visser, F., Scholte, F. A., Penning, C., & Evenhuis, H. (2010). Use of antipsychotic drugs in individuals with intellectual disability (ID) in the Netherlands: Prevalence and reasons for prescription. Journal of Intellectual Disability Research, 54(7), 659– 667. https://doi.org/10.1111/j.1365-2788.2010.01275.x Deb, S. (2013). Psychopharmacology. In E. Tsakanikos, & J. McCarthy (Eds.), Handbook of psychopathology in intellectual disability: research, practice, and policy, autism and child psychopathology series (pp. 307– 324). New York, NY: Springer Science + Business Media (book chap‐ ter, 19) (Series Editor: Johnny L. Matson). Deb, S. (2016). Psychopharmacology. In N. N. Singh (Ed.), Handbook of ev‐ idence‐based practices in intellectual and developmental disabilities, evi‐ dence‐based practices in behavioral health (pp. 347–381). Switzerland, Cham: Springer International Publishing. Deb, S. (2018). The use of medication for the management of problem (chal‐ lenging) behaviour in adults who have intellectual disabilities. www.intel lectualdisabilit y.info Deb, S., Bertelli, M. O., & Rossi, M. (2019). Psychopharmacology. In M. O. Bertelli, S. Deb, K. Munir, A. Hassiotis, & L. Salvador‐Carulla (Eds.), Textbook of psychiatry for intellectual disability and autism spectrum disorder. Cham, Switzerland: Springer International Publishing & Geneva, Switzerland: World Psychiatric Association (in press). Deb, S., Clarke, D., & Unwin, G. (2006). Using medication to manage behaviour problems among adults with a learning disability: Quick Reference Guide (QRG). London, UK: University of Birmingham, | SHANKAR et al. 1399 Published for the British Institute of Learning Disabilities MENCAP, The Royal College of Psychiatrists. http://www.ld-medic ation.bham.ac.uk. ISBN 0855370947 Deb, S., & Fraser, W. I. (1994). The use of psychotropic medication in people with learning disability: Towards rational prescribing. Human Psychopharmacology, 9, 259–272. https ://doi.org/10.1002/ hup.470090 405 Deb, S., Kwok, H., Bertelli, M., Salvador‐Carulla, L., Bradley, E., Torr, J., & Barnhill, J. (2009). International guide to prescribing psychotropic medication for the management of problem behaviours in adults with intellectual disabilities. World Psychiatry, 8(3), 181–186. https://doi. org/10.1002/j.2051-5545.2009.tb00248.x Deb, S., Unwin, G., & Deb, T. (2015). Characteristics and the trajectory of psychotropic medication use in general and antipsychotics in partic‐ ular among adults with an intellectual disability who exhibit aggres‐ sive behaviour. Journal of Intellectual Disability Research, 59(1), 11–25. https://doi.org/10.1111/jir.12119 deKuijper, G. M., & Hoekstra, P. J. (2018). An open‐label discontinua‐ tion trial of long‐term, off‐label antipsychotic medication in people with intellectual disability: Determinants of success and failure. The Journal of Clinical Pharmacology, 58(11), 1418–1426. https://doi. org/10.1002/jcph.1271 Doan, T. N., Lennox, N. G., Taylor‐Gomez, M., & Ware, R. S. (2013). Medication use among Australian adults with intellectual disability in primary health care settings: A cross sectional study. Journal of Intellectual and Developmental Disability, 38(2), 177–181. https://doi. org/10.3109/13668250.2013.778968 England, N. H. S. (2016). Stopping Over‐Medication of People with a Learning Disability (STOMPLD). www.england.nhs.uk/wp-content/ uploads/2016/06/stopping-over-medication.pdf Janowsky, D. S., Barnhill, L. J., Khalid, A. S., & Davis, J. M. (2006). Relapse of aggressive and disruptive behavior in mentally retarded adults fol‐ lowing antipsychotic drug withdrawal predicts psychotropic drug use a decade later. Journal of Clinical Psychiatry, 67, 1272–1277. https:// doi.org/10.4088/JCP.v67n0815 Janowsky, D. S., Barnhill, L. J., Khalid, A. S., & Davis, J. M. (2008). Antipsychotic withdrawal‐induced relapse predicts future relapses in institutionalized adults with severe intellectual disability. Journal of Clinical Psychopharmacology, 28, 401–405. https://doi.org/10.1097/ JCP.0b013e31817e63b9 McNamara, R., Randell, E., Gillespie, D., Wood, F., Felce, D., Romeo, R., & Kerr, M. (2017). A pilot randomised controlled trial of community-led ANtipsychotic Drug REduction for Adults with Learning Disabilities. Health Technology Assessment, 21. https://doi.org/10.3310/hta21470 National Institute for Health and Care Excellence (NICE). Challenging be‐ haviour and learning disabilities: prevention and interventions for people with learning disabilities whose behaviour challenges. NICE Guideline 11, Methods, evidence and recommendations, May 2015. www.nice.org.uk NHS Improvement (2018). Plan, Do, Study, Act (PDSA) cycles and the model for improvement. https://improvement.nhs.uk/documents/2142/ plan-do-study-act.pdf Niven, A., Goodey, R., Webb, A., & Shankar, R. (2018). The use of psy‐ chotropic medication for people with intellectual disabilities and behaviours that challenge in the context of a community multidisci‐ plinary team approach. British Journal of Learning Disability, 46, 4–9. https://doi.org/10.1111/bld.12206 Oliver‐Africano, P. C., Dickens, S., Ahmed, Z., Bouras, N., Cooray, S., Deb, S., … Tyrer, P. (2010). Overcoming the barriers experi‐ enced in conducting a medication trial in adults with aggres‐ sive challenging behaviour and intellectual disabilities. Journal of Intellectual Disability Research, 54(1), 17–25. https ://doi. org/10.1111/j.1365-2788.2009.01195.x Ramerman, L., de Kuijper, G., Scheers, T., Vink, M., Vrijmoeth, P., & Hoekstra, P. J. (2019). Is risperidone effective in reducing challeng‐ ing behaviours in individuals with intellectual disabilities after 1 year or longer use? A placebo- controlled, randomised, double-blind discontinuation study. Journal of Intellectual Disability Research, 63, 418–428. https://doi.org/10.1111/jir.12584 Rojahn, J., Rowe, E. W., Sharber, A. C., Hastings, R. P., Matson, J. L., Didden, R., … Dumont, E. L. M. (2012). The behavior problems in‐ ventory‐short form (BPI‐S) for individuals with intellectual disabili‐ ties I: Development and provisional clinical reference data. Journal of Intellectual Disability Research, 56, 527–545. Royal College of Psychiatrists (2016). Psychotropic drug prescribing for people with intellectual disability, mental health problems and/or be‐ haviours that challenge: Practice guidelines. London, UK: Faculty of Psychiatry of Intellectual Disability, Faculty Report FR/ID/09, The Royal College of Psychiatrists Publication (www.rcpsych.ac.uk). Shankar, R., Bradley‐Smith, G., Brigham, P., Devapriam, J., Osborne, A., & Axby, S. (2016). Patient‐ and carer‐held health records: Can they improve annual health checks for patients with learning disability? British Journal of General Practice, 66(645), 210–212. https ://doi. org/10.3399/bjgp16X684697 Shankar, R., & Wilcock, M. (2018). Improving knowledge of psychotropic prescribing in people with intellectual disability in primary care. PLoS ONE, 13(9), e0204178. Shankar, R., Wilcock, M., Oak, K., McGowan, P., & Sheehan, R. (2019). Stopping, rationalising or optimising antipsychotic drug treatment in people with intellectual disability and/or autism. Drug and Therapeutic Bulletins, 57(1), 10–13. https://doi.org/10.1136/dtb.2018.000009 Sheehan, R., & Hassiotis, A. (2017). Reduction or discontinuation of an‐ tipsychotics for challenging behaviour in adults with intellectual dis‐ ability: A systematic review. Lancet Psychiatry, 4, 238–256. https:// doi.org/10.1016/S2215-0366(16)30191-2 Sheehan, R., Hassiotis, A., Walters, K., Osborn, D., Strydom, A., & Horsfall, L. (2015). Mental illness, challenging behaviour, and psycho‐ tropic drug prescribing in people with intellectual disability: UK pop‐ ulation‐based cohort study. British Medical Journal Open, 351, h4326. https://doi.org/10.1136/bmj.h4326 Sheehan, R., Horsfall, L., Strydom, A., Osborn, D., Walters, K., & Hassiotis, A. (2017). Movement side effects of antipsychotic drugs in adults with and without intellectual disability: UK population‐based cohort study. British Medical Journal Open, 7, e017406. https://doi. org/10.1136/bmjopen-2017-017406 Tsiouris, J. A., Kim, S. Y., Brown, W. T., Pettinger, J., & Cohen, I. L. (2013). Prevalence of psychotropic drug use in adults with intellectual dis‐ ability: Positive and negative findings from a large‐scale study. Journal of Autism & Developmental Disorders, 43, 719–731. https://doi. org/10.1007/s10803-012-1617-6 Tyrer, P., Oliver‐Africano, P. C., Ahmed, Z., Bouras, N., Cooray, S., Deb, S., … Crawford, M. (2008). Risperidone, haloperidol, and placebo in the treatment of aggressive challenging behaviour in patients with intel‐ lectual disability: A randomised controlled trial. Lancet, 371, 57–63. https://doi.org/10.1016/S0140-6736(08)60072-0 Unwin, G., & Deb, S. (2008). A multi‐centre audit of practice of prescrib‐ ing psychotropic medication among adults with intellectual disabili‐ ties. British Journal of Learning Disabilities, 36(2), 140–143. Unwin, G. L., & Deb, S. (2010). The use of medication to manage problem behaviours in adults with a learning disability: A National Guideline. Advances in Mental Health in Intellectual Disabilities, 4(3), 4–11. https://doi.org/10.5042/amhid.2010.0538 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. org/10.1111/jar.12635 1400 | SHANKAR et al. Published for the British Institute of Learning Disabilities APPENDIX 1 C A R E P L A N P R O FO R M A (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-medication.bham.ac.uk; Unwin & Deb,2010).