Life-threatening gaps in community support for people with disabilities managing insulin
A new report by the Health Services Safety Investigations Body (HSSIB) warns that people with diabetes and a disability may be left without the support they need to safely administer insulin at home – creating life-threatening risks.
HSSIB found that community support can be fragmented, with services not always working together to recognise changing needs and make reasonable adjustments.
Diabetes care in the community can involve GPs, community pharmacy, community nursing, specialist diabetes teams and urgent and emergency care services.
The report calls on NHS England and the Department of Health and Social Care to strengthen expectations for community support and to develop a practical way for services to assess whether patients, families and carers can manage insulin safely.
Many people with diabetes manage and administer their own insulin, either by injection or using a combined monitor and pump device (a hybrid closed-loop system). However, a disability or impairment may affect their ability to safely manage their own insulin if they are not supported.
Self-administration of insulin has many benefits: it can support better control of blood sugar levels and reduce the risk of diabetes-related complications.
These complications can be short-term, like DKA or long-term, including eye problems, foot problems, heart attacks and nerve damage.
An estimated 16.8 million people in the UK had a disability in 2023/24 and this figure is set to increase.
The most common reported impairments relate to mobility, stamina/breathing/fatigue and mental health.
For people of state pension age, additional reported impairments relate to dexterity, hearing, vision and memory.
Disabilities and impairments such as these can affect a person’s ability to administer insulin to treat their diabetes.
These people are at risk of harm when pre-existing or new disabilities have not been recognised and necessary adjustments are not made. For example, they may not be regularly monitored for changes in their disability through long-term condition reviews by GPs, or healthcare staff may misinterpret the Mental Capacity Act when it comes to patients making decisions about their medication, leading to harm.
During the course of the investigation, HSSIB examined patient safety incident reports and heard directly from patients, families, carers and NHS staff affected by this issue.
Three clear themes emerged that need to be addressed:
Supporting the development of people’s competency – their skills, experience, knowledge and ability – to manage insulin
Recognising and responding when people’s circumstances change, such as deterioration in a disability
Assessment of people’s mental capacity to make decisions in relation to insulin.
These themes are clearly demonstrated in the patient stories shared in the report. One patient safety incident identified by HSSIB involved a young adult who had recently been diagnosed with type 1 diabetes.
While living in a supported situation, they managed their insulin well. When their living situation changed, they did not have the support they needed and were admitted to hospital with diabetic ketoacidosis.
They were later found to have died at home, potentially because of their diabetes management.
Another patient was found in a chair, having slept there because they were unable to move. The patient required insulin for their diabetes and had been self-administering. However, due to a trapped nerve they had recently been unable to administer their insulin.
They also developed diabetic ketoacidosis and were admitted to hospital with evidence of ‘severe’ physical harm.
HSSIB has made safety recommendations to NHS England and the Department of Health and Social Care, calling on them to:
Provide guidance for community service models that empower and support people to manage their insulin
Develop a tool for community services to use to assess competency of patients, families and carers to manage insulin and care for people with diabetes and a disability.
Deinniol Owens, Deputy Director of Investigations at HSSIB, said: “Self-management of insulin by people living with diabetes and a disability is a prime example of where person-centred care can empower people to manage their own health needs.
“Our patient safety report offers practical solutions and learning that national bodies, integrated care boards and healthcare providers can take onboard to tackle the issue of incorrectly administered insulin by patients with a disability.
“Implementation of our safety recommendations would not only benefit patients and their families and carers, but also the NHS staff that care for them across the many different community services that can be involved in diabetes care.”
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