Accessible summary A pharmacist spoke to people with intellectual disabilities about their medicines. One person with diabetes found it hard to manage. He had to inject insulin. He had to take tablets that were in a blister pack. He did not like having diabetes and was distressed. He did not store his insulin properly. He often had low sugar and had to get a glucagon injection. Pharmacists can help people who have diabetes. They can give advice about medicines. They can give advice about injecting and storing insulin. People should only ask for more insulin and medicines from the pharmacy when they need them. Summary People with intellectual disabilities may be ‘invisible’ to pharmacists. They are a complex group of patients many of whom have diabetes. Pharmacists may have little experience of the challenges faced by this high risk group of patients who may be prescribed high risk medications. This case report details information supplied by Pat, a 33 year old gentleman with intellectual disabilities and diabetes to a pharmacist researcher. The aim of the research project, which received ethics approval from a university research ethics committee, was to determine the views and knowledge of people with intellectual disabilities about medication use. Pat proved to be an excellent source of information concerning the complexity of ‘self care’ by a person with intellectual disabilities and diabetes. Many quality issues became evident to the pharmacist researcher during the interview. These issues included ‘self care’, diabetes distress, health literacy, medication information provision, safe practices around storage of insulin and glucagon, appropriateness of a monitored dosage system, repeat dispensing of insulin and the complexity of care co‐ordination. The international trend to deinstitutionalise the care of people with intellectual disabilities will require that this complex group of patients to get support from care givers and health and social care professionals in the community setting to ensure quality medication use. Pharmacists must rise to challenge to provide accessible patient centred pharmaceutical care to this high risk population.

People with intellectual disabilities are vulnerable in healthcare environments. They experience health and healthcare inequalities, and when admitted to general hospitals are at a greater risk of patient safety incidents. This is well known in specialist services, but less recognized within primary or secondary healthcare. The most significant barriers to safer and better healthcare appear to include ‘invisibility’ of people with intellectual disabilities within health-care systems, widespread lack of staff understanding of intellectual disability, the vulnerabilities of people with intellectual disabilities, and the reasonable adjustment they may need in order to access health-care services. They may be ‘invisible’ to pharmacists in general hospitals. This article aims to raise awareness among those pharmacists and others providing care and support to people with intellectual disabilities in hospital in relation to how pharmacists can contribute to safety. Medication is the main therapeutic intervention in this population. Research is needed to determine the role of pharmacists in improving health outcomes and reducing health inequalities in this vulnerable population group when they are admitted to general hospitals.

There is a scarcity of information about the experience of people with intellectual disabilities in the medication use process. Six people with intellectual disabilities consented to be interviewed by a pharmacist to determine their knowledge and views of medication use. Data from semi-structured interviews were analysed using a grounded theory approach. Self-determination and risk to the quality of the medication use process were identified as theories. Literature review provided two explanations—vulnerabilities of people with intellectual disabilities in healthcare and pharmacists have a role to play in ensuring a quality medication use process for people with intellectual disabilities. People with intellectual disabilities may be ‘expert patients’ and can provide valuable insights into their experience of medication use. They may be ‘high risk’ patients but may not be recognized as such by pharmacists.

The population with intellectual disabilities is one of the most vulnerable groups in society. Medication use is the main therapeutic intervention in this population and psychotropic medications can be prescribed for mental health conditions and for challenging behaviors. Clinical experience of prescribers and pharmacists working with people with intellectual disabilities suggests that reducing or stopping psychotropic medication is not always straightforward. What is required is rational, rather than rationed, prescribing of psychotropic medications. Concerns of clinicians working with people with intellectual disabilities and both formal and informal carers can result in maintenance of the ‘status quo.’ Setting-related, carer-related and staff-related factors play an important role in the real world of people with intellectual disabilities. Optimizing medication regimens in the adult population with intellectual disabilities is complicated but it is recognized that efforts to improve the current state of medication utilization are required for many individuals with intellectual disabilities. Pharmacists have a responsibility to include the person and/or their carer in their efforts to promote optimization of psychotropic medication use in environment in which the person lives.

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