The report examined patients under the care of community mental health services. It identified incidents where people have intentionally not taken their insulin as prescribed, including where people had Type 1 Diabetes and Disordered Eating (T1DE). The report emphasises that there have been incidents leading to ‘life-changing harm and death.’
We heard experiences from patients, families, carers and staff across primary care, mental health and diabetes services. Through the conversations it became clear many had experienced a lack of collaboration between mental health and specialist diabetes services.
Key findings
The report shines a light on the disconnect between the services with key findings including:
- Patients with a mental health problem and diabetes (requiring treatment with insulin) are not always under the care of specialist diabetes services.
- Community mental health teams may feel responsible for a patient’s diabetes care particularly when patients have been discharged from specialist diabetes services when ‘reasonable adjustments’ have not been made for their mental health needs. For example, needing to support patients who fear leaving home and are therefore unable to attend appointments in relation to their diabetes.
- Patients may disengage from specialist diabetes services when adjustments have not been made for their mental health needs. Patients described feeling “judged” by services that took a “finger-wagging” approach and used “negative language” about how they managed their diabetes without understanding their circumstances.
- There is variable integration of mental health and specialist diabetes services in different parts of the country. This is despite recognition of the disconnect between services and the risks to patient safety and physical health.
- People experiencing homelessness face significant challenges accessing the support they need for their mental health and diabetes, with limited data on the need for services and potential prejudice influencing investment.
Type 1 diabetes and disordered eating
The report also sets out a key finding around type 1 diabetes and disordered eating (T1DE). Whilst it contributes to significant patient harm, we 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 in 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 suffering with 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”.
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.
Our 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.
Investigator’s view
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.
“The investigation also identified significant concerns around access to care, including the stigmatisation of mental health within the context of diabetes care, poor recognition of type 1 diabetes and disordered eating, and repeated failures to make reasonable adjustments for patients.
“Many of the issues we identified are long standing and persistent. Our recommendations are focused on reducing inequalities and removing barriers to care. We are calling for consistent, effective integration between diabetes and mental health services to deliver safer, more coordinated care and improved outcomes for people who are managing complex mental and physical health needs.”
Breakthrough T1D’s view
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.”
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