The investigation, Insulin: supporting safe self-administration for patients in the community with a learning disability, found that people with a learning disability have experienced harm when they have not been adequately supported to self-administer insulin safely.
Patient experience
The investigation heard from "Ms H", a woman with a learning disability and type 2 diabetes who lives in a residential care setting. With specialist support and supervision, Ms H learned to self-administer her insulin, giving her greater independence and flexibility in her daily life.
However, the investigation found that the design of insulin pen devices created challenges, and a change in device contributed to a period when she was unknowingly not receiving her insulin correctly.
Her experience highlighted both the benefits of supporting people to self-manage insulin and the risks that can arise when systems, technology and support are not designed around individual needs.
Key findings
Key findings include:
- People with a learning disability (who require insulin for diabetes) have been harmed when they have not been supported to self-administer insulin safely.
- People with a learning disability are not always empowered or enabled to self-manage their diabetes where they may be able to do so.
- Limitations in the availability of learning disability specialist services affect the ability of non-specialist staff to seek advice to support safe diabetes care.
- Diabetes technologies and insulin delivery devices are not always designed in ways that support people with a learning disability.
- Evidence gaps remain around how people with a learning disability manage diabetes with insulin and what support they need to do so safely.
The investigation also found potential underreporting of insulin-related incidents in community settings, meaning the scale of the patient safety issue may not be fully recognised.
As a result of our findings, we've made a safety recommendation to the National Institute for Health and Care Research (NIHR), calling for action to address gaps in knowledge about the support and technologies needed for safe insulin self-management for people with a learning disability.
Investigator's view
Nick Woodier, Senior Safety Investigator at HSSIB, said: "Many people with a learning disability can and do successfully manage their diabetes with insulin when they receive the right support. However, our investigation found that too often the systems around them are not designed with their needs in mind.
"What is particularly striking is that many of the factors contributing to harm in this investigation are the same as those identified in our earlier reports involving other vulnerable patient groups. Issues around access to support, staff knowledge, communication, technology and the application of reasonable adjustments are recurring themes that cut across the healthcare system.
"We also found important gaps in the evidence. Without better research, we cannot fully understand how to support people with a learning disability to self-manage insulin safely or ensure diabetes technology is designed and implemented in a way that works for everyone.
"If we are serious about reducing health inequalities and improving patient safety, people with a learning disability must be better represented in research and innovation. Addressing these evidence gaps will help ensure future NHS services, technologies and support are designed around people's needs rather than expecting people to adapt to the system."
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