HSSIB investigation. Insulin: supporting safe self-administration for patients in the community with a learning disability (13 August 2026)

Summary

This Health Services Safety Investigations Body (HSSIB) report is the third in a series considering the self-administration of insulin by people with diabetes mellitus (diabetes) in community settings. Each report in the series has a focus on specific groups of people who, due to their circumstances, may be at increased risk of harm because of the way they self-administer insulin.

HSSIB identified incidents where people with a learning disability and diabetes (requiring insulin) had been harmed when they had not been supported to administer their insulin safely. Incidents included where patients had not administered their insulin, or had administered it incorrectly.

Many people with diabetes administer their own insulin to manage their blood sugar levels, either by injection or using an insulin pump. Insulin pumps can be standalone meaning the person has to adjust all settings manually, or can be a combined monitor/pump device where some of the insulin delivery is automated (a hybrid closed loop system). However, a disability or impairment may affect someone’s ability to safely administer their own insulin if they are not supported. This can lead to short-term and long-term health problems, which can be life threatening.

Content

Findings

• People with a learning disability who require insulin have been harmed when they have not been supported to self-administer insulin safely. This includes harm when a person’s health has deteriorated and from longer-term complications.
• There is potential underreporting of incidents associated with self-administration of insulin in community settings, meaning the patient safety issue may not be clearly recognised by healthcare services and oversight bodies.
• The factors that contributed to insulin-related incidents involving people with a learning disability were often similar to those that contributed to incidents involving people with other disabilities or impairments, suggesting unaddressed risks across multiple patient groups.
• People with a learning disability who require insulin are not always empowered or enabled to self-manage their condition where they may be able to do so. Recognition and implementation of adjustments to help people self-administer, and appropriately accessible education, are limited.
• A person’s learning disability is not always accurately recorded in health records; this impacts on ongoing health monitoring and whether individual needs are recognised in support of insulin-related diabetes care.
• Limitations in the availability of wider learning disability specialist services affect the ability of non-specialist staff to seek advice to help them provide safe and effective insulin-related diabetes care.
• Limited education and practical support for application of the Mental Capacity Act 2005 by healthcare staff means its principles are sometimes misunderstood, including when caring for people with a learning disability.
• Insulin pen devices and diabetes technologies are not always designed in ways that support people with a learning disability to administer insulin.
• People with a learning disability may be less able to access modern diabetes technologies, with limited national data available to provide insights into uptake.
• Evidence gaps exist around how people with a learning disability manage their diabetes with insulin; these gaps relate to how best to support an individual to self-manage their insulin and diabetes, and the design of devices and technology.

HSSIB makes the following safety recommendation

• HSSIB recommends that the National Institute for Health and Care Research, in collaboration with relevant research and policy stakeholders, assesses the feasibility of research, and supports its commissioning, to address the gaps in knowledge around services, device and technology requirements for support of people with a learning disability to self-administer insulin for diabetes. This should be undertaken through co-development with people with a learning disability and aim to create new knowledge to inform delivery of safe and effective care for this group of patients.

Local-level learning

HSSIB investigations include local-level learning where this may help providers/organisations respond to a patient safety issue at the local level. Informed by the findings in this report, the investigation shares the following:

• Does your organisation have a process to ensure people with a learning disability are correctly identified and accurately coded in health records, to support long-term health monitoring, such as for diabetes?
• How does your organisation reliably identify patients with a learning disability and communicate the reasonable adjustments required to support their care, including at points of handover of care?
• How does your organisation ensure that the ‘reasonable adjustments digital flag’ supports effective transfer of information about patient needs, is up to date, and is reliably used by healthcare staff?
• How does your organisation ensure it is meeting its public duty for services to anticipate and make adjustments for people with a learning disability, to enable access to insulin self-management support where appropriate?
• How does your organisation support staff to understand who the person wants involved in their care – such as family members and carers – and enables them to have a role supporting the management of insulin?
• How does your organisation create the conditions for staff to empower and enable patients with a learning disability – through a person-centred approach and provision of accessible information – to self-manage insulin where appropriate?
• How does your organisation ensure that access to specialist learning disability advice is available to support staff to adjust care for patients to meet their diabetes and insulin-related needs?
• How does your organisation monitor and respond to issues that may impact on the ability of a person with a learning disability to safely self-administer their insulin?
• How does your organisation provide practical training and guidance to support staff to consider the mental capacity of patients with a learning disability to make decisions about their insulin self-management, when there are concerns their capacity may be compromised?
• How does your organisation ensure people with a learning disability who meet the criteria for diabetes technology are receiving support to access it, and are not being discriminated against because of their learning disability?
• Does your organisation actively encourage and support staff to report patient safety incidents associated with insulin self-management, including for people with a learning disability?

Related reading:

• HSSIB investigation. Insulin: supporting safe self-administration for patients in the community with a disability
• Insulin: supporting safe self-administration for patients in the community with a mental health problem