Patient Story - September 2025

Meeting: Trust Board – Public Meeting

Date: 10 September 2025

Report Title: Patient Story – Adrenal crisis

Agenda Item: PUB25/09/1.4

Author: Victoria Boyce, Patient and Public Engagement Manager

Lead Director: Simon Chase, Chief Paramedic and Executive Director of Quality

Purpose: Discussion/Review

Assurance: Reasonable

Link to CQC domain:

• Caring
• Responsive
• Effective
• Safe

Link to EEAST’s Strategic Mission:

• Patient Mission

Link to Strategic Risk:

• SR1 Demand and Capacity
• SR4 Finance and Resources

Equality Impact Assessment: No negative impact identified

Previously considered by: This information has not previously been shared elsewhere.

Purpose: To share the experience of a patient with adrenal insufficiency, highlighting the impact when their knowledge of their own condition is not considered, and how staff behaviour and attitude can adversely affect them. This story links to how clinical supervision can help improve patient care and professionalism.

Recommendation: To share the experience of a patient with Addison’s disease who felt the crew did not fully understand or consider their condition during the attendance.

Executive Summary:

This patient story illustrates the experience of a patient who feels they have not been listened to and that their medical conditions have been either misunderstood or dismissed.

Introduction / Background:

This is an interview with Karen who has Addison’s disease. Karen began feeling unwell and tested positive for Covid. When she began to feel worse, she initially called 111; who advised she call for an ambulance. This was the first time Karen had experienced symptoms of an adrenal crisis and although she had emergency medication at home for this situation, she did not feel confident using it. It was also the first time she had called 999.

Karen felt the crew that attended her were focussed purely on the Covid and dismissed her adrenal insufficiency. The crew felt her observations were ok and there was nothing further they could do. Karen felt she needed assessing and the crew advised they would take her to A&E.

Karen felt the crew did not show concern for how she was feeling. She had to carry her own bags and walk out to the ambulance by herself while feeling unwell and very weak.

Karen advised the crew she was nervous and had PTSD which she feels the crew did not take into consideration. She describes the crew as uncaring in their tone and manner towards her.

She felt the crew did not have sufficient knowledge of adrenal crisis. When she tried to explain it to them, they dismissed her concerns and put her symptoms down to Covid. She did not feel listened to. When she was admitted to hospital, it was confirmed that Karen had been experiencing adrenal issues as well as the Covid.

Karen said she was made to feel she was an inconvenience to a crew that was coming towards the end of their shift.

Since this event, Karen has had to call on the ambulance service and has reported that her experiences have been excellent and is pleased that her story is being used for raising awareness.

Key Issues / Risks:

Patients often have considerable insight into their health conditions and how these affect them. It is important that EEAST staff work with patients to fully understand their experiences and how conditions such as Addison’s may impact them. Consideration should also be given to mobility and mental health issues, which may influence how the patient is feeling and indicate when additional support is needed.

Options:

N/A

How does this report link with EEAST’s vision, purpose and values?

This links to EEAST’s patient mission: To provide high-quality urgent and emergency care that is fair, responsive, and focused on patient need. It also highlights the importance of staff upholding the Trust values of accountability, respect, and excellence to deliver on the Trust’s mission.

Summary:

Not fully listening to patients and recognising that they may have detailed knowledge of their own health conditions can lead to missed symptoms and misdiagnosis. This can result in poor patient care and experience.