Empowering patients

This page is part of the wider ‘Aspects of previous patient safety alerts that should inform broader local safety initiatives’ set of webpages.

Information for patients and patient-held records

Several past alerts emphasised the importance of providing patients with written information on side effects of medication, while others linked to patient-held booklets. These resources were designed to help patients understand and comply with ongoing monitoring, safely manage changes in doses of medication and/or help with communication as the patient encountered different parts of the health service.

Understanding the effective design of patient-held materials, including to meet the needs of patients with low literacy, disabilities or who lack fluency in English, has changed since these materials were developed. The clinical context of some topics has also changed. For example, patients may be following more complex insulin regimens or undertaking their own tests for anticoagulation levels.

Alternative communication mediums, that can continuously update information for patients, such as apps, video or webpages, are now more accessible. Communication routes between patients and healthcare professionals have also changed. Text messaging is much more commonly used to provide a written record of blood test results and subsequent medication dose changes.

Remote consultations and home delivery of prescribed medication make it less practical for healthcare professionals to write instructions for patients in a booklet. Medication review and monitoring requirements are increasingly hard-wired into electronic prescribing and medicines administration (EPMA) systems.

Ensuring patients are fully informed and can take an active role in the safety and effectiveness of their treatment remains a core patient safety principle that extends to all medications and clinical procedures. All topics covered by past alerts that emphasised providing information for patients to safely manage their medication are important ones, but they may not have given a comprehensive list of priorities.

Organisations should consider other priorities alongside them. For example, past alerts encompassed lithium but not clozapine; methotrexate but not other immunosuppressants; and warfarin but not the newer direct oral anticoagulants.

  • Patient information leaflets and sites such as nhs.uk and www.medicines.org.uk should be the primary sources of up-to-date information on how patients should safely use their medication, the side effects of their medication, safe storage of their medication, importance of having regular blood tests, and signs and symptoms that require urgent medical advice.
  • Previous NPSA resources, such as the oral anticoagulation booklet, the lithium booklet, or the methotrexate booklet, will remain available to be ordered through the NHS Forms portal or Primary Care Support England for as long as there is a demand, and the clinical content will be updated by an appropriate national clinical organisation.

However, increasingly these generic resources will become outdated, as digital solutions become more prevalent and the need for more specific information becomes necessary, and may eventually be withdrawn. Organisations may wish to use materials available on the nhs.uk website, for both medicines and conditions, or information prepared by patient organisations for specific conditions.

Organisations should have a comprehensive process for engaging patients in using their medication as safely as possible, rather than prioritising any specific topic covered by past alerts.

  • Where patients are required to frequently change doses in response to blood test results, the principle of not relying on verbal communication alone but reinforcing it in a written form (or appropriate alternatives for people with visual impairment or low literacy) remains sound.

Organisations should consider the use of the most effective and appropriate system for their service and their patients’ needs (eg text messaging) rather than being bound by past requirements to provide booklets for handwritten recording of dose changes.

  • Resources aimed at patients may also be beneficial to highlight specific concerns, such as fire and explosion risk. Recent guidance from the MHRA supersedes information in a previous alert relating to fire hazard when using paraffin-based skin products.

The avoidance of fire and explosion risk is a principle that applies to other medicines, especially oxygen therapy and even GTN patches. Organisations should focus on the wider context of the safe use of medicines that carry a fire or explosion risk.

Self-administration and self-care

Past alerts have highlighted the importance of allowing patients to continue to self-administer specific medications, where they are well enough to do so safely, and the importance of allowing carers who are expert in a specific procedure the patient needs (eg manual bowel evacuation) to continue to provide that care.

The principle of supporting continued self-administration of medication or other types of care by patients or their regular carers during hospital admission remains sound but is better considered as part of overall processes for improving patient safety and independence than linked to specific medications or procedures.

 

Go back to the main ‘Aspects of previous patient safety alerts that should inform broader local safety initiatives’ webpage.