Recent estimates suggest there may be more than 900,000 adults with learning disabilities in England alone
. It is important to distinguish ‘learning disability’ from ‘learning difficulty’. Learning difficulties refer to challenges in a specific area of learning, for example dyslexia, an impairment in which the individual has difficulty with words, or dyscalculia, in which the individual has difficulty with arithmetical problems. Learning disability, sometimes referred to as ‘intellectual disability’, is a general impairment in cognitive function and has a wide spectrum. In recent years, health organisations across Great Britain, including those within pharmacy, have been actively engaged in improving healthcare and equipping healthcare professionals to care for people with a learning disability,,
. Moreover, the Care Quality Commission (CQC), the regulator for health and adult social care services in England, has resolved to “pay particular attention to the needs of people in more vulnerable circumstances”
, such as those with a learning disability.
People with learning disabilities typically have a shorter life expectancy and increased risk of early death compared with the general population, and experience greater health inequalities
. Important influencing factors include barriers to accessing healthcare, such as difficulties in requesting help or asking questions. Moreover, syndromes that result in a learning disability are also associated with specific conditions that require medical care. For example, many people with Down’s Syndrome, all of whom have some degree of learning disability, suffer with hypothyroidism, sensory impairment, obesity, epilepsy, diabetes, vulnerability to infection, and cardiac and mental health problems. The Down’s Syndrome Association (DSA) has long campaigned for better annual health checks and has produced a book
for GPs to provide them with up-to-date information on common health issues. Pharmacists should be aware of these and similar resources that can help them in supporting their patients.
The Royal College of Nursing has actively supported the emergence of learning disability nurses
. NHS hospitals will ideally have a lead nurse for learning disability who may develop ‘flagging’ systems that can alert all staff, including pharmacists, to patients with a learning disability, as well as being available to help with communication and transitions of care. Hospital pharmacists should act on entries made in the medical or nursing notes that refer to a learning disability, and make use of ‘learning disability passports’
that are being developed by some hospitals.
In the community, it may or may not be physically obvious if an individual has a learning disability. The physical features of Down’s syndrome are often obvious but, where this is not the case, consider the presence of a carer and the way they communicate with the person. Be alert to the possibility that any person communicating slowly or with difficulty may have a learning disability. GPs and district nurses can also be a useful source of information.
Patients with a learning disability may experience communication challenges when interacting with their pharmacist. For example, people with Down’s syndrome will have some level of speech and language impairment and delayed short-term auditory processing, and therefore will find it harder to retain verbal information. This can make short, verbal consultations with a pharmacist more difficult, particularly if the pharmacist is not aware of the need to make communication adjustments.
Some individuals with a learning disability can find it difficult to explain their health conditions, locate pain or say when they feel that they are not being listened to. They may also have difficulties with unclear speech and language structure. This can lead to important medical information being missed. A simple tool such as ‘My medication passport’,
, which patients and carers can use to record their medicines, can be helpful for people who find explaining their health conditions and medicines difficult.
Another challenge for people with learning disabilities may include a lack of understanding of the role of pharmacists and how to get the most from the services provided. Pharmacists should be aware that patients with a learning disability may not know that they can ask questions, or they may lack the vocabulary to explain what they want from their pharmacist.
The population of adults and children with learning disabilities is increasing
and because these patients can be more vulnerable with respect to medicines use, it is important for pharmacists to engage fully through patient-centred communication. Empathy, patience and a willingness to consult at a slower pace are essential, all of which can be challenging in busy and stressful clinical environments and practice settings.
In England, the Centre for Pharmacy Postgraduate Education (CPPE) has developed a consultation skills package
that is being updated to illustrate the need for empathy to be the foundation of effective pharmacy consultations. This is especially important for patients with a learning disability and their carers, who can feel isolated
and are at greater risk of ill-health.
The key to successfully consulting with someone with a learning disability is applying the same patient-centred skills that should be used in daily practice, but also recognising what could be done differently to facilitate effective communication. Each patient is an individual and the spectrum of learning disability encountered in practice is broad.
When speaking with a patient with a learning disability, concentrate on seeing the person, rather than the disability,,
. Patients with learning disabilities may need encouragement to engage, so should be addressed directly, while involving them as much as possible, regardless of their communication challenges. Some patients may wish to have a parent, carer or friend with them while you are talking to them, but it is important not to assume that this is the case. If present, carers and family can provide additional information during the consultation but be sure to re-engage with the patient throughout.
Explaining complex information in a busy or unknown environment can be overwhelming for the patient. Where possible, find a quieter, more comfortable environment for the consultation, and allow the person enough time to settle down and get used to the new setting before beginning.
Consider the structure of the consultation carefully and outline it at the start. As the consultation progresses, remind the patient what comes next. Ensure that adequate time is allowed for consultations like this, which may mean providing a longer session than is usually offered.
Some patients may have additional hearing difficulties, or may be wearing hearing aids that are not immediately visible, so it is important to always face patients when speaking to them. Also, be aware that some patients may use alternative communication methods, for example, sign language (such as Makaton) or a communication aid. ‘Easy read’ resources and visual prompts, such as pictures and photographs, may also be useful to support understanding.
Try to speak slowly and clearly with a soft, reassuring tone, avoiding jargon and adjusting speech and language accordingly without being patronising. Break information down into smaller chunks that are easier to understand, and be willing to repeat information or explain something in a different way.
Consider how patients feel throughout the consultation and be aware of cues of frustration or anxiety. This may include non-verbal cues, such as avoiding eye contact or looking towards their carer for support.
Insights from a discussion group about pharmacists
Down2Earth is a regular discussion group of adults with Down’s syndrome run by the Down’s Syndrome Association (DSA). The group provides the opportunity for adults with Down’s syndrome to contribute to the DSA’s work and discuss topics that matter to them. Members participated in a focus group about pharmacists in October 2015.
The focus group was able to identify that their pharmacist “gives tablets” and that “you go to the pharmacy to get medicine”. Medicine was seen as “really important” and “good for recovery”, and many individuals reported regularly taking medicines. The majority of individuals who took medicines were clear on what they were for and when they should be taken.
However, despite regularly taking medicines, most focus group members were unclear about why they needed them and how they helped. They explained that pharmacists often spoke to their parents or carers during consultations instead of them. All were unaware that they could ask the pharmacist themselves for information about their medicines. Group members identified that they would like the pharmacist to talk to them directly and give them more accessible information about their medicines. When introduced to ‘My medication passport’,
, they believed it could be a helpful tool and said they would be happy to use it during consultations.
The DSA is developing an easy-to-read leaflet about visiting the pharmacist, including what to expect and what questions people can ask. The leaflet is aimed at adults with Down’s syndrome who are planning to visit their pharmacist.
Pharmacists can play an important role in ensuring that people with learning disabilities have accessible information and adequate support so that they may participate as fully as possible in their own medicines use and health. Providing clear and easy-to-understand information about medicines, and being prepared to listen to people with learning disabilities and answer any questions is particularly important. Each individual with a learning disability is unique, and what works for one patient may not work for another. Several different ways of communicating with a patient may be needed to ensure they and their carers have the information they need.
Acknowledgement: Many thanks to Gillian Bird from the Down’s Syndrome Association for reviewing this article.
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