Health and social care systems unprepared for rising number of older adults with type 1 diabetes

As more people with type 1 diabetes (T1D) live longer thanks to research and medical advances, the systems meant to provide support in later life are often failing them. We’ve carried out new market research that shows that people living with the condition routinely experience substandard and unsafe care, despite many having expertly self-managed their condition for decades.

Type 1 diabetes is a lifelong autoimmune condition that requires constant, round-the-clock management. It is already understood that in the UK the average person loses 23 years of healthy living to the condition and as people age, managing T1D becomes even more complex. Without adequate support, people with T1D can experience a profound loss of independence, heightened emotional distress, and a serious impact on daily life.

The reality of hospital and social care

In hospital settings, more than two thirds of older adults with T1D reported they were not seen by a diabetes specialist nurse or team during their stay. Many reported being denied access to their own insulin or having their doses restricted arbitrarily, despite their extensive experience managing their condition. Some described staff being unwilling or unavailable to assist during hypoglycaemic episodes. One individual reported hiding insulin to avoid it being withheld.

In social care settings, including care homes and home-based services, carers often lacked the training required to support people with T1D safely. Reports included insulin being administered incorrectly, carbohydrate counting being ignored, and staff unfamiliarity with diabetes technologies such as insulin pumps and continuous glucose monitors. This has left older adults vulnerable and family carers under significant pressure.

80% of people surveyed expressed anxiety about what would happen if they required hospital or social care support.

The changes needed aren’t complex

Karen Addington, CEO of Breakthrough T1D UK, says: “We are facing a growing crisis in health and social care. Older adults with type 1 diabetes are being failed by the very systems meant to support them. The changes required aren’t complex, but they do demand leadership, better training, and a genuine willingness to listen.”

“People living with type 1 diabetes have been their own experts for decades, carrying a lifetime of knowledge and experience. They don’t get to retire from managing T1D, It’s a relentless, daily reality. Older adults with type 1 diabetes deserve to trust that the care they receive is safe, respectful, and grounded in shared decision making. That is not the reality today, but it can be.”

A clear plan for change

We are calling for a series of targeted reforms to improve safety and consistency in care for older adults with type 1 diabetes. These include mandatory training for all hospital staff on type 1 diabetes and the importance of self-management, in order to reduce unsafe care practices. We also recommend all inpatients with T1D have guaranteed access to diabetes specialists or trained diabetes champions to help prevent mismanagement during hospital stays.

In addition, the role of family and informal carers should be formalised in inpatient settings to ensure continuity and safety for individuals who depend on their support. National guidelines, including those from NICE, should be updated to reflect best practices in inpatient care for people with T1D, particularly in relation to self-management protocols and the use of diabetes technology.

To address gaps in social care, we propose a coordinated national strategy for managing T1D in domiciliary and residential care settings, ensuring consistent, person-centred care across the country. This should be supported by Care Quality Commission (CQC) guidelines requiring all care staff, whether in care homes or community settings, to be trained in T1D management. Finally, the charity highlights the importance of diabetes specialists offering clear, up-to-date information about available technologies such as insulin pumps and continuous glucose monitors and supporting their use as people age.

Our report Facing the Future sets out the experiences of people living with T1D and those who care for them, along with recommendations for reforms.

Read the report

About the report

This survey report was conceived, developed and led by Breakthrough T1D as part of its Access for All programme, sponsored by Abbott, Dexcom and Insulet. Novo Nordisk, Vertex and Sanofi also provided sponsorship to Breakthrough T1D to support costs associated with this research and report but had no influence or involvement in the project.