The four principles of medicines optimisation (Table 1) aim to help patients get the most out of their medicines by improving outcomes, avoiding unnecessary medicines, reducing wastage and improving patient safety. (National Institute for Health and Care Excellence, 2015; NHS England, 2019a; Royal Pharmaceutical Society, 2019).
Table 1. Principles of medicines optimisation
| Principle 1 | To understand the patient experience |
| Principle 2 | Evidence-based choice of medicines |
| Principle 3 | Ensure medicine is as safe as possible |
| Principle 4 | Make medicines optimisation routine part of clinical practice |
Polypharmacy occurs when a person is taking multiple medicines. It may have both positive (appropriate) or negative (problematic) effects; however, evidence suggests that polypharmacy may increase the risks of adverse effects, drug interactions, poor adherence and reduced patient outcomes (Duerden et al, 2013).
Shared decision-making
Shared decision-making, a key component of universal personalised care in The NHS Long Term Plan (NHS, 2019), aims to provide people with the same choice and control over their mental and physical health as they would expect in other aspects of their life (NHS England, 2019b).
Shared decision-making ensures that individuals are supported to make decisions that are right for them. This is a collaborative process through which a clinician supports a patient to reach a decision about their treatment. The clinician provides expertise about the evidence, risks and benefits of the treatment options and the patient advises the clinician about their preferences, personal circumstances, goals, values and beliefs.
To support shared decision-making in patients with learning disabilities, it is important that the following factors are taken into consideration:
- Understanding the patient experience to ensure patients are making decisions that are right for them, which links in to the medicines optimisation process
- Examining issues of intentional and non-intentional non-adherence
- Health literacy and availability of accessible information to address communication issues; a key factor in accessing healthcare.
The provision of accessible information is now mandated in the Accessible Information Standard (NHS England, 2017), which aims to ensure that people who have a disability, impairment or sensory loss receive information that they can access and understand, and that they can obtain any communication support that they need from health and care services (NHS England, 2017). The challenges of literacy impairment, learning disabilities, hearing and sight impairments, and learning difficulties (eg dyslexia), may be addressed by using appropriate good quality accessible information. Cognitive challenges may be further complicated by deficits in communication skills, such as in autistic spectrum disorders.
Empowering people with learning disabilities and the people who offer them support to be part of the medicines process can contribute to shared decision-making. It provides skills to improve access to healthcare, which can have a positive impact on addressing the health inequalities people with learning disabilities experience (Emerson and Baines, 2010).
Capacity, informed consent and the Montgomery judgement
To provide informed consent to treatment, it first has to be established that the person has the capacity to give consent. The person must also receive information that is accessible to them. All individuals are presumed to have capacity unless proven otherwise although capacity may fluctuate over time. It is important to note that an unwise decision does not mean that a person lacks capacity (Adams and Carr, 2017; Adams et al, 2018). Healthcare in the UK has moved away from the paternalistic practice of medicine. In order to provide treatment, patients have to give informed consent except in situations where the patient does not have capacity; in these cases, ‘best interests’ decisions are made. This applies to people with and without learning disabilities. The Montgomery judgement imposes a duty on any health professional ‘to take reasonable care to ensure that a patient is aware of material risks of injury that are inherent in treatment and to inform the patient of any reasonable alternative or variant treatment’ (Montgomery v Lanarkshire Health Board [2015]: 26). This judgement applies to patients with and without learning disabilities who have the capacity to consent to treatment. Providing a patient information leaflet explaining the medicine prescribed is not sufficient to comply with this judgement in people who have capacity with or without learning disabilities.
Deprescribing
Deprescribing is a medicines optimisation process involving the supervised withdrawal of an inappropriate medicine (Duncan et al, 2017).
The patient is central to the deprescribing process, which requires input from a variety of health and social care professionals across the whole health economy. Medication review is a significant part of this process and involves shared decision-making. It is important to note that issues of capacity and consent relate to people with and without learning disabilities. Acting in a person's best interests only applies if there is a lack of capacity. All patients on the primary care learning disability register are entitled to an annual review at their GP practice, which can provide an ideal opportunity to address polypharmacy, evaluate if it is problematic and then decide on an action plan.
Addressing polypharmacy by reviewing prescribed and non-prescribed medicines, for both mental and physical health and deprescribing where appropriate should be a routine part of medicines optimisation for people with learning disabilities.
Working with patients, relatives and carers
Patient information leaflets are routinely given to patients when medicines are dispensed. Patients may also receive extra information, both written and verbal, by prescribers and community pharmacists when a new medicine is initiated. However, there is limited patient information available regarding the deprescribing of medicines. Clinical guidelines tend to focus on prescribing rather than deprescribing. It is imperative that people with learning disabilities understand why their medicines are being reviewed and the possible effects of deprescribing. As well as giving consideration to the risk of relapse, there needs to be discussion about the removal of side effects that may be having a positive effect (eg drug-induced sedation in a person with insomnia). Managing patient expectation with regards to anticipated outcomes including, time frame, is also significant.
Addressing polypharmacy does not necessarily result in a programme of deprescribing. Polypharmacy, where appropriate, can improve quality of life (Duerden et al, 2013). Exploring reasons for initial and continued prescribing and appreciating the need for review of diagnosis and ongoing monitoring is an important part of the process.
The STOMP programme
The STOMP (STopping Over-Medication of People (adults) with learning disability, autism or both) campaign is an NHS England-backed call to action programme that aims to reduce psychotropic prescribing in people with learning disabilities in the absence of a mental health diagnosis (NHS England, 2019c). In December 2012, Transforming Care: a national response to Winterbourne View Hospital (Department of Health, 2012) raised concerns about the overuse of antipsychotic and antidepressant medicines in people with learning disabilities, concluding that services should have systems and policies in place to ensure that medication reviews and audits are undertaken safely and in a timely manner. Reports commissioned by NHS England highlighted that more psychotropic medicines are prescribed for people with learning disabilities than in the general population. This is often with no documented mental health diagnosis and without regular review. There is also poor communication with parents and carers, and between different healthcare providers (NHS Improving Quality, 2015; Public Health England, 2015). Researchers also found that one-sixth of adults with learning disabilities were being prescribed antipsychotic medicines by their GP (Public Health England, 2015) and that patients, carers and families did not always understand why psychotropic medicines had been prescribed (Emerson and Baines, 2010; NHS Improving Quality, 2015). Although evidence suggests that people with learning disabilities have higher rates of mental health comorbidities than the general population, this could not account for these findings. As a result, in 2016 NHS England introduced the STOMP campaign. It is an example of a deprescribing programme involving the multidisciplinary team (Table 2) (NHS England, 2019c).
Table 2. STOMP seeks to address the following
| Overprescribing of psychotropic medicines |
| Inadequate review of medication |
| Absence of a documented mental health diagnosis |
| Reason for prescribing – behaviour that challenges? |
| Lack of monitoring for adverse effects |
| Lack of monitoring for efficacy |
Common reasons why psychotropic medication is continued on a long-term basis for people with learning disabilities include a lack of access to diagnostic and medication review, limited availability of psychological resources, lack of training around positive behavioural support, high turnover of support staff, and pressure from carers and families to continue prescribing to avoid risk of relapse of adverse behaviours and placement breakdown (Table 3).
Table 3. Why do we need to review psychotropic medicines?
| Adverse effects and lack of monitoring |
| Evidence for efficacy |
| Adverse effects of antipsychotic medicines (eg metabolic syndrome, contributing towards the poor health outcomes, increased morbidity and premature mortality in people with learning disabilities) |
| Off-label prescribing |
| Diagnostic review |
| Expectation – NHS bodies, service users/patients, relatives and carers/support workers |
| National projects to reduce prescribing |
Table 4. Risks of deprescribing psychotropic medicines in people with learning disabilities
| No documented diagnosis does not necessarily mean no mental health diagnosis |
| Diagnosis of mental health conditions in people with learning disability and autism may be a challenge |
| Risks of relapse |
| Consequences of relapse (eg physical restraint, placement breakdown) |
| Implications of subsequently reducing the side effects of these medicines |
In addition to discussing patient expectation, a focus on the timing of the deprescribing will fit well with the patient-centred agenda to ensure that it is most appropriate for the patient. The level of support and the training of staff are important factors to consider when reviewing consequences of a possible relapse. In addition to discussions with the wider health and social care team, there is a need to ensure that a care plan is in place and that frameworks such as positive behaviour support are being implemented.
For patients on several different psychotropic medicines, it is good practice to reduce one at a time. As doses are reduced, monitoring is necessary for the re-emergence of behaviour that challenges. In addition, patients may consider replacing these medicines with complementary therapies without informing the healthcare team. Of particular interest is the interaction of St John's Wort with selective serotonin reuptake inhibitors, which increases the risk of serotonin syndrome. Patients who are have difficulty sleeping when sedating psychotropic medicines are reduced may choose to take prescribed hypnotics as required more frequently leading to an increased risk of dependence. Oral benzodiazepines are sometimes prescribed on an ‘as required’ basis to be administered by carers or support staff for agitation or aggression in accordance with an agreed protocol. These ‘taken as required’ medicines require careful monitoring on usage (Adams and Shah, 2016)
Antipsychotics, especially risperidone and amisulpride can cause hyperprolactinaemia. Although it can be asymptomatic, it may cause sexual dysfunction and in men, gynaecomastia. In women, hyperprolactinaemia can cause amenorrhea and reduced fertility. Reducing doses of the antipsychotic that is causing the raised prolactin levels may cause menstrual periods to return with the subsequent increase in fertility as the prolactin levels return to normal. This needs to communicated to the patient and/or the people who support them, and signposting to contraceptive services may be necessary (Adams and Shah, 2016).
When reviewing medication as part of a deprescribing programme, medicines prescribed to counteract the adverse effects of other medicines that have been stopped will clearly require review. The anticholinergic, procyclidine, prescribed to manage extrapyramidal effects of antipsychotics, has the potential for abuse and therefore will need to be closely monitored and reviewed as antipsychotics are withdrawn.
Evidence has shown that at the interface between primary and secondary care and as patients move between health providers, there is an increased risk of medication incidents (World Health Organization, 2016). People with learning disabilities who may rely on using medication administration record (MAR) sheets and dosette boxes and who are prescribed many medicines are at particular risk. Frequent dose changes can lead to an increased risk of prescribing, dispensing and administration errors. Good communication between prescribers and other health professionals, such as community learning disability teams and the community pharmacy, is paramount.
Conclusion
A holistic approach is required to address polypharmacy. To minimise the adverse effects of deprescribing, the whole patient journey should be considered. All risks, including medication prescribing, dispensing and administration errors, need to be evaluated throughout the process so that deprescribing is carried out safely and effectively, leading to successful health outcomes. Effective deprescribing can produce positive outcomes that not only impact on both physical and mental health, but also occupational and social functioning and wellbeing.
Addressing problematic polypharmacy in people with learning disabilities requires robust processes. The signing of the STOMP pledge by health and social care providers with the subsequent deprescribing of psychotropic medicines may contribute to reducing the existing health inequalities; increasing positive outcomes reducing morbidity rates and reducing premature mortality.
‘The signing of the STOMP pledge by health and social care providers with the subsequent deprescribing of psychotropic medicines may contribute to reducing the existing health inequalities; increasing positive outcomes reducing morbidity rates and reducing premature mortality’
KEY POINTS
- Addressing polypharmacy by reviewing prescribed medicines, both psychotropic and for physical health, and deprescribing where appropriate, should be a routine part of medicines optimisation within people with learning disabilities
- All patients on the primary care learning disability register are entitled to an annual review at the GP surgery, providing an ideal opportunity to address polypharmacy
- Deprescribing is a multidisciplinary medicines optimisation process in which medicines are withdrawn or doses reduced. The patient is central to this with a variety of healthcare and social care professionals across the whole health economy working collaboratively. Medication review is a significant part of this process
- Consideration should be given to the risk of relapse and the subsequent consequences
- Examination of the issues of informed consent, shared decision making and health literacy should underpin the deprescribing agenda
- Explore reasons for initial and continued prescribing together with an appreciation of the need for review of diagnosis and ongoing monitoring