This critically reflective discussion addresses two key issues, that arose from a consultation, that were identified as key barriers to medication adherence for patients with learning disabilities. This article will explore how communication plays a vital role during consultations and how medical or non-medical prescribers can reach a shared decision by using appropriate consultation styles targeted at patients with a communication learning disability. This article will look at the role the Royal Pharmaceutical Society (RPS) prescribing framework plays in guiding safe prescribing practices (RPS, 2016). It will focus on the consultation and how to reach a shared decision with a patient who has a learning disability where communication is a barrier. The process of the Rolfe et al (2001) reflective model was applied to the consultation and utilised to assist with extracting emerging themes. The Rolfe et al (2001) reflective model helps practitioners to ensure safe and effective evidence-based care which assists continuous improvement (Bulman and Schutz, 2013). Reflecting upon past clinical experiences is an important competency for all practitioners to better develop a thorough understanding and enhance future patient consultations.
Adherence and non-adherence
Adherence is described by the National Institute for Health and Care Excellence (NICE) as an acknowledged agreement between patient and prescriber concerning clinical recommendations and the extent to which the patient's actions meet these recommendations (NICE, 2016). Medication adherence has been recognised by the World Health Organization (WHO) as a significant public health issue, with 50% of patients not following recommendations, leading to poorer health outcomes (Lam et al, 2015). There is a significant issue of non-adherence displayed by learning disability patients, with literature finding only 12.39% of learning disability patients with full medication adherence (Huang et al, 2019). To be viewed as having complete medication adherence, a patient would need to take their medication according to the prescribed dose, time, frequency and directions following a discussion and shared decision during a consultation (Horne, 2006). Multiple factors influence complete medication adherence.
These include filling a prescription, taking the medications on time, and understanding directions (Payne, 2014). Non-adherence is therefore seen when a patient is not able to fully meet these criteria, and therefore, does not take their medication as prescribed.
Intentional and unintentional non-adherence
Patients who decide not to follow the prescriber's recommendations on medication therapy are known to display intentional non-adherence; this is an active decision to forego prescribed therapy (Lehane et al, 2007). There are several reasons as to why a patient would intentionally not take their medications, which may be based on a previous negative personal or indirect experience with a class of medication, for example, antibiotics (Lee et al, 2009). Whereas unintentional non-adherence is a passive process and occurs when the patient wants to follow the agreed medication therapy, however, they are prevented to do so by barriers beyond their control (Hefti, 2016). Having a learning disability means that patients find it harder to retain information, they are more likely to lose track midway through a consultation, and struggle to verbalise what they need when talking to the nurse practitioner (Ritter and Ilakkuvan, 2019). Patients with a learning disability often display difficulty in repeating and retaining information, unintentionally causing the patient to be non-adherent to treatment (Ritter and Ilakkuvan, 2019). There is evidence that both intentional and unintentional non-adherence to medication coexist (Hefti, 2016). Lam et al (2015) combine the two concepts by suggesting that overall non-adherence is a fine balance between the patient's medication beliefs, the perceived need for the medication, and the overall treatment efficacy. Lam et al (2015) reported that patients can, and often do, exhibit both types of non-adherent behaviours, for example, forgetfulness can arise from unintentional memory issues or as an intentional reason to deprioritise treatment (Chakrabarti, 2014).
Addressing non-adherence becomes more difficult depending on the type of patient you are prescribing for, and patients with learning disabilities present many unique challenges for the prescriber (Hefti, 2016). In general practice, it is important to be able to recognise if a patient has a learning disability as this allows the practitioner to tailor their practice (RCN, 2011). A survey from a social educational centre reported that 81% of people with learning disabilities required additional support with communication, and irrespective of the level of impairment, were more likely to encounter some form of verbal and non-verbal communication difficulties (Ninnoni and Chesson, 2016). Often, learning disability patients do not understand the consequences their decisions can have on their health conditions (RCN, 2011). The average gap between a person listening and then responding is reported by the RCN (2011) as three seconds, therefore, patients with a learning disability will require a longer period of time to process the question and to formulate the response (RCN, 2011). Time pressured encounters such as a consultation can often cause patients with learning disabilities difficulties in retrieving the correct words and processing information, which impedes the communication with a nurse practitioner (Ritter and Ilakkuvan, 2019). There is an emphasis on the practitioner to recognise and make adaptive changes to meet the communication needs of service users. For the prescriber, it is essential to explore the reasons why the patient has not been taking their medications throughout the consultation, taking into consideration the individual barriers and challenges to non-adherence (Gordon et al, 2020).
Safe prescribing
Safe prescribing is based on the foundations of the RPS competency framework, which guides nurse prescribers to carry out effective consultations, and focuses on the provision of information during a consultation that is patient-specific and understandable to the patient (RPS, 2016). Having a disability that affects communication can cause particular problems in primary care, as inadequate communication can lead to the wrong diagnosis, poor assessments, and inadequate health care (Murphy, 2006). Additionally, restrictions in health literacy can prove difficult for patients to communicate concerns when they are ill or in need of managing treatment in chronic illnesses such as diabetes (Flood, 2013). These barriers have a noticeable impact on a patient's ability to completely demonstrate adherence to pharmaceutical treatment (Hefti, 2016). It has been explored through Barratt and Thomas' (2019) qualitative study that many learning disability patients expressed talking to advanced nurse practitioners easier and more relaxed compared to the more formalised problem-focused interaction with a GP. Traditionally, doctors would diagnose and prescribe, and nurses would care for the overall wellbeing of a patient, listening to their concerns and calming their fears. Nurses are well practised at replacing medical and technical jargon with simpler terms that patients can understand. Applying this friendly caring nature within an advanced role creates an opportunity for the people with learning disabilities to participate with their communication limitations, creating a sense of having more time and not feeling rushed. Increasing this sense of time leads to more detailed discussions and better responses from patients (Barratt and Thomas, 2019).
Under the Mental Capacity Act 2005, practitioners have an obligation to assume that a person can make their own decisions (Hardie and Brooks, 2009). Throughout the consultation and assessment process, advanced nurse practitioners will establish if the individual may lack the capacity to make decisions, whilst taking every practical step to support the individual to make decisions on their own (Hardie and Brooks, 2009). Individuals are assessed on a decision-by-decision model, encouraging patients with a learning disability to make whatever decisions they are deemed as having the capacity to make; when certain decisions cannot be made due to lack of capacity, they will be made in the individual's best interest (Hardie and Brooks, 2009).
Active listening and hybrid consultations
Through experience, advanced nurse practitioners portray a mix of attributes that allow them to manage the complex needs of patients by demonstrating active listening, use of both verbal and non-verbal styles of communication, and promoting and encouraging a two-way conversation to engage the patient (Cocksedge, 2016). Active listening is important as it demonstrates that the nurse practitioner is engaged in what the patient has to say (Paniagua, 2011). Advanced nurse practitioners display a hybrid style of consultation, addressing both the medical diagnosis of the condition as well discussions around everyday life and issues (Barratt and Thomas, 2019). Research by both Paniagua (2011) and Barratt (2018) on communication in advanced clinical practice consultations have shown this to be most effective when the nurse practitioner adopts the hybrid consultation style. Nurse practitioners focus on effective communication strategies in consultations, as opposed to the sole application of medical knowledge, which is vital in promoting patient-centred consultations (Barratt, 2018). To demonstrate the combination of the hybrid consultation, a brief social conversation and a friendly goodbye is within the scope of the nursing patient-centred aspect of the hybrid consultation style, whereas diagnosis and advice with regards to a worsening condition is very much the scope of the medical consultation (Barratt, 2018). Delivering hybrid consultations highlights the advanced level of skills required by the advanced nurse practitioner, validating the adaptability of an advanced level practitioner (Barratt and Thomas, 2019). Professional governing bodies such as the Nursing and Midwifery Council (NMC) (2015) and the RCN have circulated documents supporting the RPS competency framework (2016), which emphasises the importance of tailoring patient care on a patient-to-patient basis, including adapting terminology, language, and providing additional time which is patient-centred and specific. Collaborative communication in advanced clinical practice consultation is essential to optimise patient outcomes and adherence to treatments (Barratt, 2018).
Building and establishing trust
The concept of trust is important in healthcare because this service generally involves an element of uncertainty and risk for the vulnerable patient who is reliant on the knowledge and competence of the practitioner (Bell et al, 2009). High levels of trust have been associated with greater acceptance to recommended treatment and better medication adherence (Bell et al, 2009). Building and establishing trust with patients who have a learning disability is vital, as they generally have smaller social networks which mainly consist of family, therefore, at times, it may be difficult to gain trust as an advanced nurse practitioner (Kamstra et al, 2014). A qualitative study by Mostafavi et al (2021) explored the barrier of distrust between practitioner and patient. The concept of patients not trusting the capability of the practitioner was identified as a major concern for poor medication adherence in people with diabetes, further highlighting the importance of developing trust with patients (Mostafavi et al, 2021). Encouraging patients to discuss any concerns or preferences of medications they are prescribed and, therefore, allowing them to participate in shared decision making, aims to develop trust in the patient-practitioner relationship. Shared decision making is seen as a middle-ground between informed choices where the patient makes the choice independently, and the traditional medical decision-making process (Bell et al, 2009). The government health policy ‘No decision about me, without me’ supports the shared decision-making process based on clinical evidence and the patient's preferences (Department of Health, 2012). This policy requires practitioners to adopt a consultation style that is non-judgmental, supportive and empowered. Developing trust involves asking open-ended questions to encourage patients to share their concerns and health issues and is extremely important in building a trusted relationship with patients that have a learning disability (Department of Health, 2012). Shared decision making creates a therapeutic alliance between the patient and prescriber and promotes positively on medication adherence (Jordan et al, 2002).
Written information
Patients require information to help them use their medication safely and to help facilitate a deeper understanding of the benefits and harms of treatment (Grime et al, 2007). Burkhart and Sabaté (2003) identified that medication discussions with patients with a learning disability are best supplemented with written information. Under the Disability Discrimination Act (1995) reasonable adjustments should be made and learning disabled patients should be provided with information that is provided in accessible formats. Easy read guides are designed for patients with learning difficulties to incorporate pictures, large text, and simple explanations of the long-term condition (Mencap, 2021; RCN, 2011). In two articles, easy read and pictorial support were specifically mentioned. Walmsley et al (2016) suggested the use of illustrated easy-to-read information would help improve practice when explaining diseases to patients with learning difficulties. Fish et al (2017) reported 17% of people with learning difficulties wanted easy read leaflets with pictures and diagrams to better support their understanding of medication. One of the core elements in the RPS framework (2016) is providing clear and understandable information to patients. Adapting this information into ways patients with a learning disability can understand takes time but can be hugely rewarding. It offers empowerment to the patient to make informed decisions and has a deeper understanding of their long-term condition, ultimately having a more positive impact on medication adherence.
Carers and communication
Learning disabled patients often have input from a diverse range of care staff who support medication management, including social care professionals and pharmacists. In addition, patients have both formal and informal carers who provide a fundamental role and front-line support to patients for their medication needs (Strategic Society Centre and Independent Age, 2014). However, some carers and practitioners lack the appropriate training, struggle with responsibility, and find the role stressful. Lack of training can lead to poor communication skills in the consultation leaving the patient frustrated and not supported to manage their long-term condition with some independence. Recent NICE guidance has identified that there needs to be a collaborative approach to managing medication adherence in older patient with learning difficulties (NICE, 2009). Incorporating staff training to aid a better understanding of the needs of patients with learning difficulties remains an important component towards improving the experiences of learning disabilities. Professional development is continuous and undertaking regular training will lead to better communication and knowledge for the practitioner and make consultations more streamlined (Jordan et al, 2002). Practitioners should take the opportunity to work alongside carers to help refine communication skills for the individual (Gates, 2003).
Communication passports
Hemsley et al (2001) reported that everyone can communicate, even those with a learning disability if given the right support and assistance to do so. Communication passports are a tool used by people with learning disabilities; these provide both a practical and person-centred approach to passing on key information about people with complex communication difficulties (Nursing Times, 2018; Phillips, 2019). They provide information about the communication needs and health needs of a patient, which is useful to assist in bridging the communication gap between practitioner and patient. Having this information at the start of a consultation would be invaluable as it would allow the consultation to be patient-centred and assist to formulate a more complete and holistic assessment of the patient in line with the consultation aspects of the RPS framework. Unfortunately, not all patients have a communication passport to bring with them to practice as they are not aware they exist or are incomplete or not updated (National Institute for Health Research [NIHR], 2021). In a time of technological advancements, a move towards digital passports would be more beneficial, with regular updates from the multidisciplinary team. This, in turn, can be shared across numerous health platforms the patient may encounter, allowing the nurse practitioner to better prepare for the patient prior to their consultation.
Practicing at an advanced level
Practicing as an advanced level practitioner where prescribing is a big part of the role, requires a higher demand and measure of responsibility to reinforce the professional, legislative and regulatory framework, of which, all independent medical and non-medical prescribers are expected to meet the requirements, outlined within A competency framework for all prescribers (RPS, 2016). Addressing each element of the framework will enhance patient safety and promote effective prescribing. Practitioners are required to demonstrate an in-depth understanding of issues surrounding medication adherence and be able to identify individual barriers for all types of patients. Having this awareness will allow both the prescriber and the patient to identify strategies and communication tools that are effective in improving medication adherence. To achieve this, the prescriber must have adequate knowledge of the patient's health and are completely satisfied that the medicine/treatment will benefit the patient's health needs.
Conclusion
Communication formulates a large part of a consultation and as a practitioner, it is vital to communicate effectively with a patient to prevent misdiagnosis and limiting misunderstanding of medications and treatments. Communication impairment is a considerably large hurdle for the patient with a learning disability and the practitioner to overcome, to effectively reach a shared clinical decision. If patients with a learning disability consider consultations stressful and difficult to engage in, they will attend less, resulting in ineffective health care (Murphy, 2006). People with a learning disability prefer to see a nurse practitioner as they feel they have more time for them, they are not rushed and are able to actively participate during a consultation. Nurse practitioners displaying advanced skills of being approachable, patient, adaptable and resourceful will ensure the patient with a learning disability is felt to be at the heart of the consultation. Utilising communication passports during consultations will bridge the communication gap and help the patient to have a better understanding of their condition and treatment plans. Addressing if communication passports can be adapted to an online platform would be beneficial to the patient and nurse practitioner. Learning disability education is an area of training that is lacking in general practice, there have been no provisions made to make the training mandatory. Incorporating mandatory yearly staff training will ensure practitioners have the tools and knowledge to adapt communication techniques during a consultation. It is essential that the qualities of transparency, duty of candour and openness is rooted in clinical practice, this demonstrates the greater responsibility of the nurse prescriber (Nuttall et al, 2020).
This discussion highlights that all practitioners need additional time when consulting with patients who have a learning disability. Practitioners need to have patience, display adaptability and be approachable. Nurse practitioners have a suitable skill set that would help promote medication adherence in patients with a learning disability and should be utilised more for appointments and reviews.
KEY POINTS
- Having a disability that affects communication can cause particular problems in primary care as inadequate communication can lead to the wrong diagnosis, poor assessments and inadequate health care
- Reasonable adjustments should be made for learning difficultly patients and this can be in the form of easy reads guides that incorporate larger text, simple information and pictorial explanations
- Communication passports are a tool used by people with learning disabilities; these provide both a practical and person-centred approach to passing on key information about people with complex communication difficulties