NHS England
NHS / Health Body
Action Planned
NHS England is working with the Association of Ambulance Chief Executives (AACE) to ensure patients inform 999 call handlers or healthcare professionals if they are steroid dependent; NHS England's National Primary Care Team will consider GP awareness of alerting ambulance services to specific conditions; the ICB will take the circumstances surrounding Margaret’s death to their GP learning sessions and consider a system-wide safety alert. (AI summary)
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Dear Coroner, Re: Regulation 28 Report to Prevent Future Deaths – Margaret Huntley who died on 10 December 2022
Thank you for your Report to Prevent Future Deaths (hereafter “Report”) dated 13 August 2024 concerning the death of Margaret Huntley on 10 December 2022. In advance of responding to the specific concerns raised in your Report, I would like to express my deep condolences to Margaret’s family and loved ones. NHS England are keen to assure the family and the Coroner that the concerns raised about Margaret’s care have been listened to and reflected upon.
Your Report confirmed that Margaret’s death was contributed to by delays in identifying that she required exogenous steroid medication, and delays in the prescription and administration of exogenous steroid medication. Accordingly, your Report raised concerns around the understanding of, and response to, suspected steroid insufficiency / Addison’s Crisis amongst ambulance service staff. I have responded to each of your concerns below, in so far as they fall within NHS England’s remit.
1. Ambulance service staff’s understanding of the importance of steroid medication and responding to suspected steroid insufficiency / Addison’s Crisis. NHS England is aware that the Ambulance Service, through the Association of Ambulance Chief Executives (AACE) and the AACE National Ambulance Services Medical Directors’ group (NASMeD), has engaged with the Addison’s Disease Self- Help Group and the Pituitary Foundation, to ensure patients are aware of the importance of informing a 999 call handler or any healthcare professional that they are steroid dependent. Where a patient shares information with an emergency call handler that they are steroid dependent, advice can then be given to that patient to follow the instructions provided by their doctor about self-administration of their emergency steroids. The Joint Royal Colleges Ambulance Liaison Committee (JRCALC) produces clinical guidelines for UK paramedics and includes guidelines for the recognition of and management of adrenal crisis and of patients who are steroid dependent. National Medical Director NHS England Wellington House 133-155 Waterloo Road London SE1 8UG
03/10/2024
I note that you have also sent your Report to the AACE, who would be the appropriate organisation to provide further information on this. My regional North West colleagues have also engaged with North East and North Cumbria Integrated Care Board (hereafter “ICB”) on the concerns raised in your Report, who we understand will be responding to the Coroner directly. We understand that North East Ambulance Service NHS Foundation Trust (NEAS) are working internally to address communications around steroid medication, focusing on key messages around adrenal crisis, and that workshops are also planned. Work is also underway to establish a more effective system for the monitoring of guidance issued to their staff members.
2. Call triaging guidance for ambulance service staff regarding patients who are prescribed steroid medication
NHS Ambulance Services are required to process 999 calls through an approved triage system. There are currently two systems approved in England for primary 999 assessments: NHS Pathways and the Advanced Medical Priority Dispatch System (AMPDS). In AMPDS, the call handler will be prompted to remind callers who are triaged as ‘Acute adrenal insufficiency / crisis or Addison’s disease’ to do what their doctor has instructed for these situations. The NHS Pathways triage product, which was used in Margaret’s case, is built to progress through a clinical hierarchy of urgency. This means that life-threatening symptoms or problems are assessed first, and less urgent symptoms or problems are assessed sequentially thereafter. The endpoint of an assessment is reached when a clinically significant factor cannot be ruled out, and so a “disposition” (outcome) is reached. Dispositions range from an Emergency Ambulance to Self-Care. Questions on past medical history or details regarding prescriptions are utilised sparingly across the system and are only enquired about where necessary. This is because NHS Pathways is a ‘triage’ rather than a ‘consultation’ tool, and the assessment is primarily based on the patient’s presenting symptoms at the time of the call. If a patient is unconscious, the lowest disposition that can be reached is a Category 2 emergency ambulance response, and questions around adrenal insufficiency would not be asked before reaching the disposition (because this would not impact upon the category of ambulance required). However, the system does go on to ask whether the caller has known adrenal insufficiency following an ambulance dispatch. Where this question is answered as “yes”, specific “in-line” advice about administration of an emergency steroid kit is given to the caller. If a patient with adrenal insufficiency is conscious at the time of a call, the symptoms- based triage assessment proceeds based on clinical hierarchy. Patients with adrenal insufficiency are often knowledgeable about their condition and have specific
instructions from their specialist on when and how to use emergency treatment kits, so if they volunteer this information, this should be treated as a complex call as detailed below in respect of steroid cards.
3. Steroid Emergency Cards We note that your concerns are not limited to adrenal insufficiency, but that you have also raised a concern over the awareness and usage of Steroid Emergency Cards. NHS England issued a National Patient Safety Alert in August 2020 regarding the introduction of a new Steroid Emergency Card to support early recognition and treatment of adrenal crisis in adults. The Alert is available here:
emergency-card-to-support-early-recognition-and-treatment-of-adrenal-crisis-in- adults/. It is the responsibility of the Care Quality Commission (CQC) to ensure that the actions within an alert have been actioned by NHS provider organisations. However, it is NHS England’s understanding that all Trusts are now compliant with this particular Alert. The Alert prompted a review of the content in the NHS Pathways system when a patient notifies the call taker that they have a steroid card. It was agreed that, should the patient declare that they have been issued with a steroid card, this would meet the criteria for a “complex call” which would require clinical input. In addition, ambulance clinicians have access to patient care information (a Summary Care Record (SCR) or urgent care plan) where important clinical information can be uploaded by a patient’s GP, or in some cases by the patient, and can include information about steroid dependency. NHS England understands that NEAS will be promoting use of the Addison’s Self Help Group and their awareness raising page for steroid-dependent patients, which encourages patients to ensure that their SCR is up to date and to carry a Steroid Card and emergency injection kit: https://www.addisonsdisease.org.uk/newly-diagnosed- paramedic-information.
4. GP awareness of their ability to alert ambulance service staff to specific patient health conditions such as steroid insufficiency My colleagues from NHS England’s National Primary Care Team have been asked to consider this concern and whether any actions are required. I also note that you have sent your Report to the Royal College of General Practitioners, and we would welcome their input and advice on this issue. However, it should be noted that ambulance services have expressed a preference towards information being documented on a patient’s SCR or urgent care plan, rather than through alerting. In Margaret’s case, we understand from the ICB that an alert was in place but was difficult to identify. The ICB will be taking the circumstances surrounding Margaret’s death to their GP learning sessions and they are also considering a system-wide safety alert relating to this.
I would also like to provide further assurances on the national NHS England work taking place around the Reports to Prevent Future Deaths. All reports received are discussed by the Regulation 28 Working Group, comprising Regional Medical Directors, and other clinical and quality colleagues from across the regions. This ensures that key learnings and insights around events, such as the sad death of Margaret, are shared across the NHS at both a national and regional level and helps us to pay close attention to any emerging trends that may require further review and action.
Thank you for bringing these important patient safety issues to my attention and please do not hesitate to contact me should you need any further information.
Thank you for your Report to Prevent Future Deaths (hereafter “Report”) dated 13 August 2024 concerning the death of Margaret Huntley on 10 December 2022. In advance of responding to the specific concerns raised in your Report, I would like to express my deep condolences to Margaret’s family and loved ones. NHS England are keen to assure the family and the Coroner that the concerns raised about Margaret’s care have been listened to and reflected upon.
Your Report confirmed that Margaret’s death was contributed to by delays in identifying that she required exogenous steroid medication, and delays in the prescription and administration of exogenous steroid medication. Accordingly, your Report raised concerns around the understanding of, and response to, suspected steroid insufficiency / Addison’s Crisis amongst ambulance service staff. I have responded to each of your concerns below, in so far as they fall within NHS England’s remit.
1. Ambulance service staff’s understanding of the importance of steroid medication and responding to suspected steroid insufficiency / Addison’s Crisis. NHS England is aware that the Ambulance Service, through the Association of Ambulance Chief Executives (AACE) and the AACE National Ambulance Services Medical Directors’ group (NASMeD), has engaged with the Addison’s Disease Self- Help Group and the Pituitary Foundation, to ensure patients are aware of the importance of informing a 999 call handler or any healthcare professional that they are steroid dependent. Where a patient shares information with an emergency call handler that they are steroid dependent, advice can then be given to that patient to follow the instructions provided by their doctor about self-administration of their emergency steroids. The Joint Royal Colleges Ambulance Liaison Committee (JRCALC) produces clinical guidelines for UK paramedics and includes guidelines for the recognition of and management of adrenal crisis and of patients who are steroid dependent. National Medical Director NHS England Wellington House 133-155 Waterloo Road London SE1 8UG
03/10/2024
I note that you have also sent your Report to the AACE, who would be the appropriate organisation to provide further information on this. My regional North West colleagues have also engaged with North East and North Cumbria Integrated Care Board (hereafter “ICB”) on the concerns raised in your Report, who we understand will be responding to the Coroner directly. We understand that North East Ambulance Service NHS Foundation Trust (NEAS) are working internally to address communications around steroid medication, focusing on key messages around adrenal crisis, and that workshops are also planned. Work is also underway to establish a more effective system for the monitoring of guidance issued to their staff members.
2. Call triaging guidance for ambulance service staff regarding patients who are prescribed steroid medication
NHS Ambulance Services are required to process 999 calls through an approved triage system. There are currently two systems approved in England for primary 999 assessments: NHS Pathways and the Advanced Medical Priority Dispatch System (AMPDS). In AMPDS, the call handler will be prompted to remind callers who are triaged as ‘Acute adrenal insufficiency / crisis or Addison’s disease’ to do what their doctor has instructed for these situations. The NHS Pathways triage product, which was used in Margaret’s case, is built to progress through a clinical hierarchy of urgency. This means that life-threatening symptoms or problems are assessed first, and less urgent symptoms or problems are assessed sequentially thereafter. The endpoint of an assessment is reached when a clinically significant factor cannot be ruled out, and so a “disposition” (outcome) is reached. Dispositions range from an Emergency Ambulance to Self-Care. Questions on past medical history or details regarding prescriptions are utilised sparingly across the system and are only enquired about where necessary. This is because NHS Pathways is a ‘triage’ rather than a ‘consultation’ tool, and the assessment is primarily based on the patient’s presenting symptoms at the time of the call. If a patient is unconscious, the lowest disposition that can be reached is a Category 2 emergency ambulance response, and questions around adrenal insufficiency would not be asked before reaching the disposition (because this would not impact upon the category of ambulance required). However, the system does go on to ask whether the caller has known adrenal insufficiency following an ambulance dispatch. Where this question is answered as “yes”, specific “in-line” advice about administration of an emergency steroid kit is given to the caller. If a patient with adrenal insufficiency is conscious at the time of a call, the symptoms- based triage assessment proceeds based on clinical hierarchy. Patients with adrenal insufficiency are often knowledgeable about their condition and have specific
instructions from their specialist on when and how to use emergency treatment kits, so if they volunteer this information, this should be treated as a complex call as detailed below in respect of steroid cards.
3. Steroid Emergency Cards We note that your concerns are not limited to adrenal insufficiency, but that you have also raised a concern over the awareness and usage of Steroid Emergency Cards. NHS England issued a National Patient Safety Alert in August 2020 regarding the introduction of a new Steroid Emergency Card to support early recognition and treatment of adrenal crisis in adults. The Alert is available here:
emergency-card-to-support-early-recognition-and-treatment-of-adrenal-crisis-in- adults/. It is the responsibility of the Care Quality Commission (CQC) to ensure that the actions within an alert have been actioned by NHS provider organisations. However, it is NHS England’s understanding that all Trusts are now compliant with this particular Alert. The Alert prompted a review of the content in the NHS Pathways system when a patient notifies the call taker that they have a steroid card. It was agreed that, should the patient declare that they have been issued with a steroid card, this would meet the criteria for a “complex call” which would require clinical input. In addition, ambulance clinicians have access to patient care information (a Summary Care Record (SCR) or urgent care plan) where important clinical information can be uploaded by a patient’s GP, or in some cases by the patient, and can include information about steroid dependency. NHS England understands that NEAS will be promoting use of the Addison’s Self Help Group and their awareness raising page for steroid-dependent patients, which encourages patients to ensure that their SCR is up to date and to carry a Steroid Card and emergency injection kit: https://www.addisonsdisease.org.uk/newly-diagnosed- paramedic-information.
4. GP awareness of their ability to alert ambulance service staff to specific patient health conditions such as steroid insufficiency My colleagues from NHS England’s National Primary Care Team have been asked to consider this concern and whether any actions are required. I also note that you have sent your Report to the Royal College of General Practitioners, and we would welcome their input and advice on this issue. However, it should be noted that ambulance services have expressed a preference towards information being documented on a patient’s SCR or urgent care plan, rather than through alerting. In Margaret’s case, we understand from the ICB that an alert was in place but was difficult to identify. The ICB will be taking the circumstances surrounding Margaret’s death to their GP learning sessions and they are also considering a system-wide safety alert relating to this.
I would also like to provide further assurances on the national NHS England work taking place around the Reports to Prevent Future Deaths. All reports received are discussed by the Regulation 28 Working Group, comprising Regional Medical Directors, and other clinical and quality colleagues from across the regions. This ensures that key learnings and insights around events, such as the sad death of Margaret, are shared across the NHS at both a national and regional level and helps us to pay close attention to any emerging trends that may require further review and action.
Thank you for bringing these important patient safety issues to my attention and please do not hesitate to contact me should you need any further information.