New report identifies ‘disconnect’ in specialist diabetes care for adults with mental health problems

T1DE services

The report also sets out a key finding around type 1 diabetes and disordered eating (T1DE). HSSIB identified that whilst it contributes to significant patient harm, they heard varying views about what T1DE is and research gaps around the identification and care for patients with T1DE.

The harm that can be caused by the safety issues identified are highlighted in more detail in two powerful cases set out the report. Alex and Megan’s experiences were shared by their families as sadly both had died. Alex following self-administration of insulin and Megan after experiencing type 1 diabetes and disordered eating. Both Alex and Megan experienced difficulties accessing the specialist mental health and diabetes care they needed.

Alex’s family described how there were no services available that met her needs with no collaborative care planning. They further described a lack of support for someone experiencing an emotionally unstable personality disorder.  Megan’s family told HSSIB that she never received a formal diagnosis of T1DE. They described the lack of accepted definition of the condition and an absence of pathways of care. Her family described “siloed treatment models and no joint working between specialist mental and physical health services.”

Experience of healthcare providers

From a staff perspective, a patient experiencing a mental health problem with access to insulin was described as a ‘huge red flag’. Several staff had known patients who had died following self-harm with insulin. They told the investigation they were ‘scared’ and often ‘helpless to do anything’. Community mental health teams also described how they had experienced psychological harm and distress following incidents.

HSSIB’s findings and subsequent recommendations are designed to strengthen care for people with co-existing mental health conditions and insulin-treated diabetes, with a clear focus on improving integration between services and advancing recognition and research into T1DE.

Nick Woodier, Senior Safety Investigator at HSSIB, said: “Our report emphasises that too often individuals managing both diabetes and a mental health problem face a troubling disconnect between specialist physical and mental health services. This fragmentation of care can leave patients without the co-ordinated support they need, increasing the risk of harm. Alex and Megan’s cases demonstrate that these are not just abstract safety concerns documented in reports; they have a real and devastating impact on people and their families.”

Immediate and meaningful change needed

Hilary Nathan, Director of Policy at Breakthrough T1D said “Type 1 Disordered Eating, or T1DE, is a serious and life threatening condition. The people who live with it deserve compassion, understanding and consistent, coordinated care. Yet this report reveals a deeply troubling reality. Healthcare services are failing to provide even the most basic safeguard for those managing both a mental health condition and type 1 diabetes – the safe administration of insulin. The consequences of this failure are devastating and, in some cases, fatal. These findings cannot be ignored. Healthcare professionals, policymakers and all those with responsibility for patient safety must listen with urgency and act decisively. Without immediate and meaningful change, more lives will be placed at risk.”

Where to find support

If you or someone you know is living with type 1 diabetes and experiencing disordered eating, we have information, shared experiences and links to further support.